End-of-Life Choice, Palliative Care and Counseling


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.


Get Acquainted With the Value of Hospice

by Mark Shparber
Taunton Daily Gazette
February 3, 2013

Most people are not familiar with the value hospice can provide in the last months, weeks or days of life. There is no need to be afraid of hospice. Hospice is there to help. Hospice specializes in making sure that the patient is living the best quality of life possible as they come to the end of their life.

There are two types of hospice care. There are inpatient services in which the patient will be transferred to a local facility to have 24 hour care. This works out best for people who may not want their family members to have to care for them 24 hours a day.

There are also outpatient services in which hospice will come to the home and help with the care of the patient. They will work hard to make sure that the patient and their family is supported in every facet, through any obstacle, mentally, emotionally, or medically. They are trained and know how to deal with whatever issues could arise.

Death can be scary to anyone who is dealing with it directly or indirectly. There can be many medical and emotional issues, as well. Hospice can help you and your family deal with both of these areas. More

Officials Say Medicare Patients Delay Using Hospice

by Robin Williams Adams
The Ledger
February 1, 2013

How did a program to make the final months of someone’s life as rewarding as possible become an almost taboo topic?

Children think parents whose health is declining won’t want to hear about it.

Parents don’t want to upset their children.

Speakers from the three hospices covering Polk County talked for an hour Thursday about the benefits of hospice care and the importance of not waiting too late to enlist it.

Everyone from physicians and caregivers to patients and their relatives needs to be informed, they said, while acknowledging it’s often a struggle to get people to listen.

“It’s a difficult topic to discuss for me,” said Dr. Richard J. Cardosi, a gynecologic oncologist at Watson Clinic.

“People don’t want to discuss it.” More

Louisiana Medicaid Will Keep Covering Hospice for Dying People After All, Jindal Administration Says

by Jeffrey Young
Huffington Post
January 24, 2013

Good news for poor people in Louisiana who are dying: Gov. Bobby Jindal (R) won’t cut off funding for your end-of-life hospice care, his administration announced Wednesday.

Louisiana’s Medicaid program was set to cut off coverage of hospice services on Feb. 1 but the Jindal administration’s top Medicaid official visited a candlelight vigil protesting the move Wednesday evening with a message: never mind, the Associated Press reported.

Health and Hospitals Secretary Bruce Greenstein announced the reversal as hospice program supporters were gathering for a candlelight vigil on the state Capitol steps to protest the cut. Greenstein said his department will use federal grant funding to continue the services for the poor and terminally ill.
Cheers went up across the small crowd of people gathered in what they expected to be a somber vigil. Instead, they celebrated.

The Louisiana Department of Health and Hospitals issued a written statement explaining that the state instead would “reform the Medicaid Hospice Program, with a focus on providing services in the community.” Pending federal approval, Louisiana would emphasize providing hospice care in patients’ homes, rather than nursing homes, and impose stricter requirements for doctors and patients to prove hospice is necessary, for example. Patients in hospice care get treatments to ease the symptoms of their ailments but don’t receive therapies intended to cure them.

The AP has the backstory on how Louisiana almost joined Oklahoma as the only states that don’t cover hospice care under Medicaid. It started with spending cuts Jindal imposed to address a budget shortfall last month.

Greenstein said when cuts are required to the Medicaid program, only a few optional benefits can be reduced without violating requirements for the state’s participation in the program it runs with the federal government. Hospice is an optional program the health department said has been available since 2002.


Terminally Ill Patients Bracing for Medicaid Hospice Cuts

by Britney Glaser
January 22, 2013

Some of the state’s poorest people in their final days of life are about to face a big cut in health coverage.

Starting February 1st, Medicaid will no longer pay for hospice care in Louisiana.  7News looks into what is behind the falling budget axe and what it means to dying patients.

It has only been three months since Eric Tillman of Lake Charles watched his wife, Cynthia, take her final breaths.  “She had done chemo,” he said, “and the cancer went into remission for a year.”

A diagnosis of stage four ovarian cancer limited his wife’s final days, but hospice care ensured they were not filled with pain and a hospital stay.  CHRISTUS St. Patrick Hospice Nurse Director, Michele Hurley says hospice care allows terminally ill patients to pass away with dignity.  “We work toward having the best quality of life possible for patients that are terminally ill,” she said.

Hurley says her passion is her hospice patients, but state cuts taking effect next month will mean Medicaid patients will no longer have hospice care covered.  “Eliminating the hospice benefit for Medicaid recipients, you’re creating a whole pool of unfunded patients,” she said.

The changes are because of a mid-year budget gap. Medicaid hospice is just one stripped program. Sherrill Phelps with the Louisiana-Mississippi Hospice Association says this will deprive terminally ill patients of the opportunity to die comfortably and with care.  “They’re deserving to have the help and the support and the financial payment to provide that care for those people,” he said.

Louisiana will become one of only two states to eliminate Medicaid hospice. Arizona was in that mix, but has already reinstituted it because it costs more.  “You’re going to pick them up and bring them to the emergency room, to the hospital, which costs considerably more than the $140/day paid for by the state for the Medicaid program,” said Phelps. More