End-of-Life Choice, Palliative Care and Counseling

healthcare proxy

Elder Abuse – A National Tragedy

By Ashley Carson Cottingham
National Field Director

On June 15, World Elder Abuse Awareness Day, we take time to acknowledge that an estimated 2.1 million older Americans fall victim to elder abuse, neglect and financial exploitation each year. At Compassion & Choices we work diligently to protect older adults by upholding their rights at the end of life, sometimes when they are no longer able to speak for themselves. And this year we became proud members of the Elder Justice Coalition in Washington, D.C.

Elder abuse occurs on a regular basis, affecting some of the most vulnerable members of our society. What’s even worse is that for every reported case of elder abuse, neglect and exploitation, experts believe there are five that go unreported. We must put an end to it.

Our work has exposed a form of elder abuse that is rarely discussed. It occurs when an older adult’s expressed wishes at the end of life are ignored, and as a result they are subjected to unwanted and invasive medical treatment. We believe this unwanted treatment absolutely constitutes elder abuse. More

Tell Everyone You’re Good to Go

Dear friends,

Hindsight is always 20/20. But I still feel utterly duped by the medical establishment for what happened to my father, Ted Hamann.

At age 73, he went into his local hospital for a routine surgical procedure. He came out of it doing as well as expected, but six hours later he was in an ambulance on a 75-mile mad dash to Boston due to a stroke.

Doctors there gave us nothing but optimistic predictions about how Dad would respond to surgery. And we felt hopeful afterwards, when he was discharged to rehab to learn to walk, talk and swallow again.

Unfortunately, he had another stroke—this one even more debilitating. Once again, we were steered toward treatment as the only logical and responsible option. We were skeptical, so at every turn we gave doctors my father’s DNR and reminded them that he wanted no extraordinary measures or aggressive treatment of any kind. More

Physicians debate whether patients need to know they’re dying

By Melissa Healy, Los Angeles Times
April 25, 2013

In the days when American physicians dispensed oracular commands and their judgments were rarely questioned, a doctor could take it upon himself with few ethical qualms to keep from a patient the bad news of a terminal diagnosis.

For better or worse, those days may be well behind us. But physicians have not ceased debating one of the stickiest and most universal ethical quandaries of medical practice: How, when and why does one inform a patient that he or she is dying? The latest evidence of that ongoing discussion was published Wednesday in the British Medical Journal.

The latest question in the journal’s “Head to Head” feature, “Do patients need to know they are terminally ill?,” essentially pits one side’s reasonable arguments that “we’re all dying” and “you never really know when and of what a patient will die” against another side’s equally compelling assertions that “knowledge allows better decisions” and “a patient can still have hope — to live to see a daughter married or achieve a cherished goal or to die a peaceful death at home.” More

Aging in America Conference Features Panel on Rise of Unwanted Patient Care

What:  

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.

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.