End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Advance Directive

How to Develop Effective End-of-Life Plans

by Philip Moeller
U.S. News & World Report
February 26, 2013

Retaining control over life decisions and maintaining dignity as the end of life approaches are top priorities for nearly everyone. These objectives can be achieved by good planning and the preparation of the proper directives under your state’s laws. These safeguards have been greatly improved in many states in recent years. Still, experts say, few seniors have the right tools to make sure their end-of-life wishes are followed by family members and caregivers.

People often think of such matters only when they or a family member are seriously ill. But if a stroke, dementia, or another incapacitating event occurs, it may be too late. If people cannot make decisions for themselves and do not have directives or a power of attorney in place, decisions may be made for them that they would never have agreed with if they had been able to decide. 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.


Viewing Advance Directives as a Celebration of Life

by Dianne Day
February 9, 2013

I only know one thing for sure in my life these days, and that is that I will someday die.

How, when or where is a mystery, but it will happen — that I know.

No, I do not have a chronic or terminal disease. In fact I am quite healthy.

Do I have a choice of how, when or where I will die? Do I have a choice of deciding for myself when medical treatment changes from benefiting my quality of life, to being a burden which only prolongs my death? What role does my doctor play in all this? How do I choose someone to advocate for me in these matters, if I am no longer able to communicate my wishes?

Writing about these questions is far easier to do than answering them.

I have been an advocate for others before: for my husband, my mother-in-law and father-in-law. I am one of the lucky ones, for I have no regrets that the decisions I made on their behalf were the right ones, and family and friends supported them. We talked often about their quality of living, and when they would be ready to die.

But it was not always smooth. More

End-of-Life Conversations When the End Is in Sight

by Jeanne Dennis
Huffington Post
February 7, 2013

The Changeable Meaning of “Do Everything”

In the final stages of congestive heart failure, Bart Andrews lay in bed, minimally responsive and gasping for breath. He was surrounded by his adult children, whose conversation kept returning to the refrain, “We want everything done for him.”

Mary Winters, RN, one of my colleagues at the Visiting Nurse Service of New York’s Hospice and Palliative Care Program, was in the room for a first visit. One of her great skills — and a core competency for any care provider who works with people at the end of life — is listening.

As the conversation unfolded, the adult children told years-old stories of when their mother died. “‘I remember Dad saying he didn’t want to be hooked up to a tube, or a ventilator, like Mom was,’” Mary quotes one of the children as saying. Then, one by one, the others voiced similar memories.

“They needed time to explore,” says Mary. “An important part of any family conversation is to understand what is meant by ‘do everything.’” Does it mean surgery, feeding tube, ventilator, or does it mean pain medication, oxygen, antibiotics if necessary, and other measures aimed at comfort and quality of life? More

Advance Care Planning Improves End-of-Life Care

by Liam Davenport
February 5, 2013

Advance care planning (ACP) for older adults results in improved quality of care at the end of life, with less in-hospital death and the increased use of hospice services, the results of a study indicate.

“There appears to be utility in each aspect of ACP that was studied-completing an AD [advance directive], assigning a DPOA [durable power of attorney], and having an ACP discussion with next of kin-albeit in somewhat different ways,” says Kara Bischoff (University of California at San Francisco, USA) and colleagues.

The team looked at data from 4394 Medicare beneficiaries enrolled in the cohort Health and Retirement Study who died between 1993 and 2007. Individuals were at least 50 years of age at enrollment and did not die before age 65 years.

Overall, 76% of participants engaged in ACP, with 2.8% having an AD only, 9.3% a DPOA only, 13.9% an ACP discussion only, 9.4% an AD and a DPOA, 5.9% an AD and an ACP discussion, 8.8% a DPOA and discussion, and 26.0% all three components.

The mean time from completion of an AD to death was 61 months, while the time to death after DPOA completion was 56 months. The use of ACP increased after 1993, with more than half of patients who died during or after 1997 engaging in ACP.

Patients who engaged in ACP were significantly less likely to die in the hospital, more likely to be admitted to a hospice, and less likely to have a hospice stay of no more than 3 days than those who did not engage in ACP.

Furthermore, having an AD alone was linked to a 69% reduced risk for hospital stays of more than 14 days in the last month of life, while having an AD or a DPOA was associated with an increase in hospice admission (67% and 40%, respectively) and a reduced likelihood of a hospice stay of 3 or fewer days (12% and 7% reduction, respectively). More