Aging in America Conference panel sponsored by the Compassion and Choices: “What is Patient- and Family-Centered Care and What Happens When We Fail to Prevent It?” Patient-centered care should not include unwanted medical treatment and unnecessary suffering. Yet millions of Americans with advanced illnesses or who are terminally ill:

• Suffer needlessly from undertreated pain and other agonizing symptoms;
• Undergo pointless and costly invasive tests and treatments, often in their last days and hours; and
• Have their treatment preferences or advance directives ignored or overridden by healthcare professionals and others.

Why:   

A new study published in Feb. in the Journal of the American Medical Association examining Medicare claims data found that between the years 2000 and 2009 treatment in acute care hospitals decreased while the usage of intensive care units (ICU) and healthcare transitions the last month of life increased. An accompanying Journal of American Medical Association editorial, “Changes in End-of-Life Care Over the Past Decade More Not Better,” 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.”

Who:  

Mickey MacIntyre, Chief Program Officer, Compassion & Choices (read his testimony about how unwanted medical treatment at life’s end causes needless costly suffering before the Institute of Medicine’s Committee on Transforming End-of-Life Cares);
Lynn Feinberg, MSW, Sr. Strategic Policy Advisor, AARP Public Policy Institute;
Brian Lindberg, MMHS, Exec. Dir., Consumer Coalition for Quality Health Care;
Andrew MacPherson, Director of Government Affairs at Jennings Policy Strategies Inc.

Where:

Crystal C (West Tower/Green Level), Hyatt Regency Chicago, 151 E. Wacker Dr.

When:  

Friday, March 15, 1pm-2pm CT. If you cannot attend panel but want an interview Tuesday (March 12) Wednesday (March 13), Thursday (March 14) or Friday (March 15) with Compassion & Choices Chief Program Officer Mickey MacIntyre, please contact Sean Crowley: 202-550-6524, seancrowley57@gmail.com.

How:   

If you want to attend panel, but have not registered yet for the Aging in America Conference, please contact Jutka Mándoki: jutkam@asaging.org, 312-239-4834.

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.

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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.

The pundits are out and about this time of year making various predictions about 2013, and the forecasting provides for fascinating reading. You’d think we’d have learned something after the Mayan apocalypse failed to occur. Right now,we’re being told the price of gas will plummet in 2013; Nate Silver will become the model for all polling conducted for media outlets; Fidel Castro will die; Americans will pay more taxes and more for healthcare; and Lincoln will win best picture at the Oscars. We’re gobbling up predictions faster than your uncle’s attack on the pile of Christmas cookies.

So, here are my predictions for 2013:

POLST programs will be available in half of all states in this country by year’s end. POLST (Physician Orders for Life Sustaining Treatment) programs represent an important step forward in advanced planning for end-of-life care. They go further than living wills because they use standardized forms, converting patient wishes about end-of-life care into physician orders for treatment to be used by emergency personnel, hospital staff, and other healthcare providers. They provide physicians with a vehicle through which to lead conversations with patients and family members about how aggressively a patient wants his/her illness to be treated. If a patient wants limited treatment or palliative care only, this becomes part of the POLST form. The form goes in the patient’s chart as a medical order.

POLST programs have been made available in 15 states through legislation or regulation, and there is ongoing work in 28 other states. The Catholic Church has worked to oppose POLST programs in Wisconsin, suggesting the use of POLST forms would be a slippery slope to euthanasia. Regardless of the Church’s opposition to written end-of-life care plans in medical charts, I believe POLST programs will expand to half of all states in 2013.

Speaking of the Church, I believe they will continue to quietly fund 70% or more of the opposition’s work in states like Vermont, Montana, and Massachusetts. An analysis of the anti-Death with Dignity campaign spending in Massachusetts shows 71% of all money raised by opponent ballot question committees ($3.4M out of $4.8M) could be attributed to Catholic resources. An additional 15% came from sources traditionally associated with anti-gay activities ($730,000 out of $4.8M); nearly $500,000 came from major individual donors.

These patterns will continue in 2013 with most of the money supporting anti-Death with Dignity efforts coming from the Catholic Church. Furthermore, the Church will hide behind organized medicine, minimizing their role in the opposition. Nowhere will the public find evidence of the true motives behind the opposition—opposition based on Church-based teachings—but rather the public will continue to encounter slippery slope arguments which haven’t proven to be valid in the 15 years of implementation in Oregon and Washington.

This spring will abound with Death with Dignity legislation throughout the New England area. We’ll see activity in the Vermont legislature; and in Massachusetts, Connecticut, New Jersey, Maryland, and perhaps, even Maine. Vermont will continue to lead the nation in progress toward end-of-life care policy reform through legislative means, becoming the first state to enact Death with Dignity through the legislature.

My final prediction: BBC Three will experience mild success with its sitcom about three blokes who start an assisted-suicide business. Way To Go won’t achieve the run-away success of Downton Abbey, but it will intrigue viewers, nonetheless.

POLST programs, the Catholic Church, success in Vermont, and an assisted-suicide comedy noir series on the BBC; it’s going to be an exciting year.

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.

Nobody gets out of here alive, as somebody said — we all eventually die. But we don’t like to talk about that, even with our doctors. And as the New York Times just editorialized, some politicians like it that way and have done what they can to keep us ignorant of our choices and to keep our doctors ignorant of what we desire toward our ends. Remember those nonexistent “death panels,” a figment of politicized paranoia? The sad and maybe even lethal irony here is that, as with so-called “pro-life’ activism about reproduction, such politicization most likely has the opposite effect of what’s intended — more suffering and less control over our own lives.

There’s a better way, and some people and even states are moving forward, despite some lingering opposition by political opportunists, certain religious “leaders,” and the like. As noted by the Times:

Fortunately, advance planning for end-of-life decisions has been going on for years and is continuing to spread despite the demagogy on the issue in 2009. There is good evidence that, done properly, it can greatly increase the likelihood that patients will get the care they really want. And, as a secondary benefit, their choices may help reduce the cost of health care as well.

One of the advances the Times recommends is a relatively new tool called POLST — Physician Orders for Life-Sustaining Treatment. It’s another type of medical/legal “advance directive” that can give you, and your loved ones, more input in how you are treated — or not treated — when gravely ill, even if you can no longer express your wishes. Doctors often recommend it too, once they learn about it, and there is a concerted effort to spread awareness about POLST around the nation. It can allow you and your — or any — doctor to act in according to your preferences for medical care as you are dying.

In a new practical piece I’ve co-authored, Keith Loring, M.D., a physician who just dealt with the death of his father says this:

When it came time for my family to discuss end-of-life care issues for my father, the POLST framework was invaluable. It greatly facilitated early and useful dialogue and allowed us to come to a very comfortable consensus despite a longstanding history of disagreement over his earlier long-term care issues.

Our article includes links to the California POLST site and for the form itself (the sample above is just the first of two pages; it also should be printed on a specified color paper, which leads to POLST often being referred to as “that bright pink thing”). Other states have their own sources — unless they’ve been blocked by the boogeyman of “death panels” and the like. Some states also allow some nurses to fill out the form with you — we’ve tried to get that policy adopted here in California, but not yet- but however it’s done, it’s worth it. If you live in a state other than California, check here for your options.

Even if your state does not (yet) have a POLST option, consider documenting your preferences using other forms, like a living will, durable power of attorney for health care, and the like. You can learn more about these here. And talk with your doctor and other caregivers, and your loved ones about this. I can tell you from many experiences in many places that you’ll be doing everybody a favor, including yourself.