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.

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.

Here is a little appreciated fact: Patients cannot order medical care; they can only accept or refuse it.  Only a doctor can order medical treatment.  In an extreme medical situation, the doctor can offer CPR, but it is the patient’s job to accept or reject.  Any patient can refuse CPR.  This refusal is known as Do Not Resuscitate or DNR, and for obvious reasons needs to be made ahead of time. The question is, when is making the decision to be DNR appropriate?

A further definition is needed.  DNR (and its colleague, Do Not Intubate, DNI) is not the same as DNT, or Do Not Treat.  A patient, at their discretion, may receive maximal medical care, including drugs, dialysis and surgery, and still be DNR.  The DNR order in that situation is simply a line that the patient will not allow the doctors to cross.  “Do everything you can to help me, but if it fails I do not want to end my life on a machine or with some gorilla pounding on my chest.”

On the other hand, a DNR can be a part of a hospice or palliative care program, so that all care is focused on comfort and not treatment.  It is even possible, in very unusual circumstances, to receive hospice care without being DNR.  A DNR order is like any medical decision, it can be changed if appropriate.  DNR is not the same as “pulling the plug.”

How aggressive to be in receiving medical care is a personal decision.  In order to make certain that our individual desires are followed it is critical that, as much as possible, these decisions be made ahead of time.  This avoids panic, confusion, and guilt.  In that spirit, let us review a few cases.

Ben is a 54-year-old gentleman with lung cancer, which has spread to bones and liver and is growing despite the third chemotherapy.  His doctors inform him that a fourth chemotherapy has a 5% chance of helping him and a 20% chance of killing him.  He wants to try the chemo.  His physician says, “OK Ben, we will order the chemo but if things fall apart and your body starts to fail and we cannot fix it, do you want to be put on a machine?”  Do you think Ben should make himself DNR?

Ben made himself DNR.  He survived the chemo, but the cancer progressed and he died one month later.

Ellen has lymphoma that has spread to her lungs and she is having a very hard time breathing.  She requires a complex chemotherapy, but has a 50% chance of cure.  However, she also has a 50% chance of ending up, at least for a couple weeks, on a breathing machine, until the cancer shrinks and her lungs improve.  If Ellen were your friend, what would you suggest?  What if Ellen was a 31-year-old Mom?  A 94-year-old Alzheimer’s patient?

Ellen had chemo, ended up on a respirator for a month, was cured of her lymphoma, and went home to her two-year-old daughter.

Stan is a 71-year-old man with advanced cancer at home on hospice. His wife loves him very much and wants him to be comfortable, but the idea of him dying at home frightens her.  They have agreed that when he deteriorates they will call 911 and bring him back to the hospital.  Should Stan be DNR?

Stan made himself DNR.  He died peacefully in his sleep at home and never made it to the hospital. His wife is doing OK.

Susan is a 45-year-old woman with Multiple Sclerosis who is gradually becoming paralyzed. She does not want to be in a hospital or on any sort of machine. Her husband and 17-year-old child disagree and want her to “do everything.”  Should Susan be DNR?  If she were DNR, what would you say to the family?

Not wanting to upset her family, Susan decided not to be DNR and ended her life on a respirator in the hospital.

These are common problems and make the point that life is messy and it is vital to have conversations regarding end-of-life early so that the patient, family and doctors have a basic plan in place.  This does not mean that the plan will not change or that it makes things easy, but it gives everyone a place to start and gets feelings in “the open.”  After decades of having these conversations daily I have come to the absolute conclusion that there is only one “correct” way to approach end-of-life planning; that is exactly as each patient desires.

Two weeks ago, Dr. Arif Nazir got a call from a colleague about a 79-year-old woman at an Indianapolis hospital. The cardiologist on the phone explained there was nothing more that could be done for this patient, who had advanced heart failure, chronic lung disease and diabetes.

After a brief conversation, Dr. Nazir agreed to admit her to a nursing home and try to keep her out of the hospital, respecting her recently signed “do not resuscitate” order, or D.N.R.

It was a promise that was broken within several hours, much to Dr. Nazir’s dismay. The reasons highlight troublesome problems with long-term care that frequently frustrate caregivers and that are receiving fresh attention from medical providers and Medicare.

At the nursing home, staff members noticed several hours after her transfer that the patient’s oxygen levels were very low. This was to be expected given her condition, Dr. Nazir said, but no one picked up the phone to ask his advice.

Instead, a doctor on call who wasn’t familiar with the patient or her recent medical history gave the order to send her back to the hospital — just where the patient, her son and her physician didn’t want her to go.

This might not have happened if the woman’s D.N.R. order had traveled with her when she was discharged from the hospital. But that didn’t happen, and staff members in the nursing home had no way of knowing what this patient’s wishes were (she was groggy and unable to say at that time) or whom they should contact to find out.

This is a distressingly common problem. D.N.R.’s signed in hospitals aren’t regularly transferred to skilled nursing facilities. So when crises arise (and this occurs often in frail, sick older patients) no one knows what to do, and shipping the patient off to the hospital becomes the default option.

That may seem like a sensible choice — after all, hospitals are where really sick people go to get better — but for nursing home patients it can have deleterious consequences.

Dr. Nazir, a geriatrician at Indiana University and a staff physician at several Indianapolis nursing homes, explained why, using the example of another patient in her late 80s with advanced Alzheimer’s disease who becomes excessively agitated and combative at night.

“When she goes to the hospital, she will be seen by a physician who doesn’t know her, usually for only a few minutes,” he said. “Most likely, he’ll end up doing a lot of tests because histories are not readily available for these nursing home patients.”

Because the patient is old, with several other medical conditions, “every test this physician does is going to come out with some kind of abnormality, and she’ll be admitted for further evaluation and observation.”

In the hospital environment, this older woman with cognitive impairment will feel disoriented and most likely afraid. “There will be lots of strangers, lots of noise, perhaps little sleep, and she will be at very high risk of becoming even more agitated,” Dr. Nazir said. “At that point, she’s going to get aggressive medications.”

In short order, this patient may become sedated, delirious and confined to bed. Upon discharge, an older person like this “will come back to us very debilitated, really having lost a lot of quality of life” and often unable to regain it, Dr. Nazir said.

Few caregivers realize this is a likely chain of events. Rarely do nursing home doctors or nurses sit down and explain the risks of hospitalizing a frail older person who is profoundly physically and mentally compromised.

This is the set of problems that a new pilot program of the Centers for Medicare and Medicaid Services hopes to address. The program is to be introduced in Alabama, Indiana, Missouri, Nebraska, Nevada, New York and Pennsylvania later this year, and I’ll describe how it works in a future post.

What about you? Have you had experiences along the lines of those described by Dr. Nazir? Have you witnessed this all-too-frequent revolving door between nursing home and hospital and seen its adverse effects?