Archive for the ‘Amy Berman’ Category

Guest Blog: Think Silver–Not Pink–for Breast Cancer Awareness Month

Amy Berman
Tuesday, November 1st, 2011

Amy Berman is a Program Officer for the John A. Hartford Foundation. She heads the Foundation’s Integrating and Improving Services portfolio, focusing on the development and dissemination of innovative, cost-effective models of care that improve health outcomes for older adults. More of  Amy Berman’s posts can be found/followed on the Hartford health AGEnda blog. You can follow her on Twitter @NotesOnNursing and follow the John A. Hartford Foundation @JHARTFOUND.

horizontalline

I have been celebrating Breast Cancer Awareness month. This isn’t just because I had the good fortune to celebrate my birthday in October, but because one year after being diagnosed with a terminal illness and choosing to treat it non-aggressively, I feel great. I have less pain than I did one year ago. The shooting pains I often felt last year in my right breast have almost entirely vanished, thanks to my hormone-suppressing drugs. My lower spine—the site of metastasis—aches only occasionally, and only when I overdo it. If I get plenty of rest and fluids, eat right, and avoid standing for long periods or lifting heavy objects, I remain pain free. Although I may take a few more breaks than I used to or find myself more tired at night, I can still fill each day with meaningful activities, just as I always have.

I can honestly say that this has been the best year of my life, both personally and professionally. I have been able to spend quality time with my family, while taking advantage of numerous opportunities to speak and write about the importance of individuals being involved in decisions about their own health care, in addition to my ongoing work as senior program officer for the John A. Hartford Foundation. I have been more loving, more accepting of love, and I believe more effective personally and professionally than at any other point in my life.  And I feel good.

It may sound odd but—honestly—I am living with Stage IV cancer and it’s been a great year.

Yet while celebrating my unexpected and very welcome happiness, I cannot help but think about others living with cancer and other serious illness this month. My experience is atypical, and not just because I chose a palliative, non-aggressive treatment. I am atypical because I am in my fifties. Most cancer patients—63 percent, in fact—are over age 65. This means that most cancer patients aren’t suffering only from cancer, as I am. Most are also simultaneously coping with other chronic diseases, such as diabetes or congestive heart failure, making it more difficult for them to tolerate debilitating treatments. And for some older adults, their health status before the cancer diagnosis may challenge their recovery.

Because cancer is primarily a disease of aging, we shouldn’t be thinking pink for Breast Cancer Awareness month—we should be thinking silver.

I shudder to think of how I would be feeling had I not been an informed patient, able to fully participate in my own treatment decisions with the help of my medical team. Had I been steered into aggressive treatment, I would likely be recovering from painful surgery while incapacitated due to the overwhelming fatigue, pain, and nausea that go hand in hand with radiation and chemotherapy. If patient-centered care can do so much to keep the quality in what remains of my life, how much more important is patient-centered care for older adults facing not only a terminal diagnosis, but also the presence of one or more chronic diseases? Older adults need care tailored to their individual diagnosis, health status, goals, and beliefs long before they grapple with terminal illness such as mine.

Thankfully, I am not the only one concerned about this issue. The Raise the Voice campaign, an initiative of the American Academy of Nursing, recently hosted a Critical Conversation on best practices in advanced care planning and decision making. The organizers gathered nurse and physician experts in advanced care planning to share best practices, and also included a nurse who could serve as a patient voice. That was my role. When I had the opportunity to speak, I noted that even though death is a common occurrence—2.4 million Americans die each year—conversations around end of life care remain uncommon.

This seems strange to me. We are consumers of health care.  In most other areas of our economy, our consumer protection laws afford us safeguards.   Health care is, ultimately, a product that we all have to buy, either directly or indirectly through our insurance companies. Yet when we are making the most critical decisions about our health, we are not routinely guaranteed as patients to have full information about our condition and all possible treatment approaches.  The decisions are left entirely to the discretion of the doctors and hospitals patients use.   And while some health care providers integrate the patient and family in the planning process, we are guaranteed a more full disclosure when buying a house than when battling serious illness.

I believe disclosures about treatment for serious and potentially life-limiting illness should be required. Conversations about the end of life are difficult, but not impossible. Doctors, nurses, and all health professionals have more and more tools at their disposal. We can help patients choose a health care proxy and fill out the POLST form, as my oncology center, Maimonides, does so well. Many organizations are now providing training for providers to help them learn how to approach end of life conversations with their patients, such as the End-of-Life Nursing Education Consortium (ELNEC) led by the City of Hope and the American Association of Colleges of Nursing. At the Raise the Voice meeting, Suzanne Prevost, President Elect of Sigma Theta Tau (the Honor Society of Nursing) and Associate Dean of the University of Kentucky, shared an interesting approach to helping patients understand the differences between treatment options. In a small study, researchers showed terminal cancer patients a video that included patients who chose aggressive care and patients who chose palliative care. The images were neither shocking nor graphic. After seeing the video, many patients who had intended to choose aggressive care changed their minds and chose palliative care.

I am not saying, of course, that palliative care alone is always the right choice. I just believe that patients deserve to make informed choices. All I ask, as Breast Cancer Awareness month comes to a close, is for providers and policymakers to understand that every person experiencing cancer or other serious illness deserves an opportunity to choose a treatment approach tailored to his or her beliefs, hopes, and tolerance, based on the diagnosis, the likely course of the disease, and the chances for survival. Think about the older adults in your life. Would you want them to have a say in decisions that affect how they live for their remaining days and how they die? If we can all “think silver,” perhaps we can make health care better for older Americans.  Here’s to another good year.  Cheers.

horizontalline

This is the sixth in a series by Amy Berman chronicling her diagnosis. Here are the other posts in the series:

Guest Blog: Can the Blind Lead the Seeing?

Amy Berman
Monday, August 1st, 2011

Amy Berman is a Program Officer for the John A. Hartford Foundation. She heads the Foundation’s Integrating and Improving Services portfolio, focusing on the development and dissemination of innovative, cost-effective models of care that improve health outcomes for older adults. More of  Amy Berman’s posts can be found/followed on the Hartford health AGEnda blog. You can follow her on Twitter @NotesOnNursing and follow the John A. Hartford Foundation @JHARTFOUND.

Many of you know that eight months ago I was diagnosed with Stage IV inflammatory breast cancer, which has spread to my spine.  My incurable diagnosis means that I live with a chronic disease, just like millions of older adults. Life continues to be fairly routine with work, play, friends, and family.  One of my routines occurs on the first Monday of each month, when I visit the Maimonides Cancer Center for an infusion of drugs designed to slow the cancer’s impact on my bones.  The center is cheerful.  The staff greets me by name and hands me a buzzer that vibrates when I am next, the same buzzer you get at your local Olive Garden.  Each month I see many of the same people receiving their treatments.  I have already figured out who likes Dr. Phil, the local news channel, or a good book as they dutifully absorb their chemotherapy regimen.

One woman in particular caught my eye, perhaps because she is elderly and frail—just the kind of person that the Hartford Foundation is dedicated to helping. She appears to be in her eighties. Standing less than five feet tall, she walks in slowly and carefully, a pink crocheted cap on her head, accompanied each time by her son. Over the course of her infusion, her color fades. She leaves more frail than she came in. Each visit, she is visibly worse.

Of course I know that chemotherapy almost always causes short-term debilitation. But looking at this older woman, I can’t help but wonder. Did her clinicians talk to her and her son about her prognosis and the relative benefit of the chemotherapy? Did they understand the risks and benefits of aggressive versus palliative treatment? Maybe they do understand, and the chemotherapy will cure the cancer after months of misery, making it all worthwhile. But maybe not.

I speculate about this woman because I know that too many health providers are uncomfortable talking to patients about death and dying. Of course it is human nature for physicians to want to avoid telling patients that the end is near. Unfortunately, they are no longer trained to use the word “terminal.” Instead, they use veiled language like “advanced illness.”  Would you know that meant you had a life limiting, incurable disease?  I am glad my oncologist was willing to be clear and honest with me. But even at Maimonides, I encountered health professionals who were uncomfortable with conversations that acknowledged mortality.

For example, one day I went to see a social worker at Maimonides to ask for help with my will. (Maimonides provides access to volunteer legal advice for its cancer center patients.) I told her I was seeking help in getting my affairs in order for my children, since I had terminal disease. She blanched.

“You shouldn’t speak that way,” she said. “There’s always hope.”

“I have stage 4 metastasized inflammatory breast cancer,” I said, puzzled. “Of course I am ever hopeful there might be a cure. But the reality is, I am terminally ill. I need to get my affairs in order.”

She became visibly upset. She was concerned that I was depressed, misinformed, and focusing on the negative. Later, she even spoke to my oncologist and suggested I needed to join a support group.

Maybe a support group would be helpful, but the social worker was missing the point. I am not misinformed. I am very well informed (which my oncologist told her, thankfully). There is a fine line between acceptance and giving up hope, and I believe I am on the right side of it.  Perhaps the social worker was trained to interpret words like “terminal” and “dying” as red flags ripe for her intervention. Open and honest communication about a prognosis should not be a cause for alarm.

The social worker was trying to be helpful and did give me the information I sought. But I see this kind of response as a barrier. If health care professionals are uncomfortable talking about death and dying, or hearing their patients openly confront their illness, how can patients with serious health issues ever hope to get realistic information about their prognosis?

Many people interested in health care reform advocate for patient-centered care, the concept that patients should make decisions about their own treatment and care. But how can patients and their families make useful decisions without good information? (See this great blog from Jesse Gruman on this conundrum.) How can patients guide a team of health professionals if they aren’t well-informed?

When patients are not well-informed by the health care team about their illness they are unable to fully participate in patient-centered care.  It is akin to asking a blind person to lead a team of seeing people through a minefield. Why do we keep patients blindfolded?  Providers must be willing to address issues of death and dying.  To physicians, nurses, social workers, and other members of the health care team, I call upon you to help your patients face mortality with eyes wide open.  Only then can they can help you understand their goals and the kind of care they want to receive.

 

This is the fifth in a series written by Amy chronicling her diagnosis.
You can find the first four here:

Better Health’s Grand Rounds Volume 7, Number 44

CFAH Staff
Tuesday, July 26th, 2011

Welcome to Better Health’s Grand Rounds Volume 7, Number 44! This is our second time hosting Grand Rounds and we’re excited about sharing the posts we received.  The theme of this week’s collection came from a recent Health Affairs blog post by CFAH president, Jessie Gruman, Patient Advocates: Flies In The Ointment Of Evidence-Based Care, which addresses a few of the many challenges of basing health care practices, policies, and decisions on evidence of effectiveness.

We have posts that wrestle with conflicts of interest in reporting on evidence, obstacles to the delivery of evidence-based care, using evidence in practice and care decisions, and providing patient-centered care.  We believe this topic is important to all those involved in health care, from patients and doctors to hospital administrators and policy makers.  Thank you to everyone who submitted a post.  We hope you enjoy this week’s collection.

Consider the Source

Evidence of clinical effectiveness/harm is revealed over time by additional “white-coat” research and via the real-life experiences of patients and clinicians.  Identifying how and by whom evidence is revealed is an important part of evaluating its reliability and accuracy…and towards following the winding path towards effectively applying evidence to practice.

Elaine Schattner, in her post on Medical Lessons, Patients Words, Unfiltered, Medical Journalism and Evidence, shares her concerns that:  1) journalists often select patients’ voices to support pre-determined points of view;  2) making rational decisions based on data is often more complicated than surface appearances; and while 3) evidence should be the foundation of care…we also must acknowledge that outliers exist.

In Direct-to-Consumer Advertising and the Role of Advocacy Organizations: Two Threats to Evidence Based Testing, Josh Freeman, from Medicine and Social Justice, reviews two recent JAMA “commentaries” that addressed challenges to the implementation of evidence-based practice guidelines from two very different but very powerful forces. The marketing of health care technology and treatment directly to consumers and patient activists present both obstacles and opportunities to advance the delivery of evidence-based care.

How did this Heart Drug get Approved in the First Place?, asks Carolyn Thomas, in her post on The Ethical Nag: Marketing Ethics for the Easily Swayed, referring to the drug Nesiritide.  A heart attack survivor, Carolyn “figured the purpose of the drug approval process is to ensure that testing the effects of new drugs on patient outcomes has already been done before approval is granted.”  Pat Salber, of The Doctor Weighs In, also tackles this in her post: Niseritide, the “Lost Decade”, and the Pinto.

Obstacles to Delivering Evidence-based Care

One challenge to the delivery of evidence-based care is the interpretation and application of evidence by individual clinicians.  A Country Doctor, in his post, Patient Centered or Evidence Based Medicine – Can we really have both?, notes that every physician has to evaluate the evidence and determine how to apply it to each patient’s unique situation.

From Joel M. Topf, of Precious Body Fluids, comes, The Problem with Numbers, the Curse of Intermediate End-points, expressing his concern that medical interventions are increasingly oriented around improving the “numbers” – what he defines as intermediate endpoints – rather than real goals of preventing morbidity and mortality in addition to effectively addressing patient concerns and symptoms.  He worries that medications “are pursued and approved only for their ability to fix the numbers.”

The frenzied pace of many medical practices can also be a barrier to providing optimal care, says Steve Wilkins, of Mind the Gap, in Lack of Time and Reimbursement—Is That Why Physicians Don’t Do a Better Job Communicating With Patients? Steve points out that although doctors claim that there is not enough time for patient education, evidence shows that such conversations improve patient outcomes.

InsureBlog‘s Kelley Beloff makes a similar argument in Wait Times in the Medical Office, proposing that patients should consider why doctors run late before making judgments or feeling frustrated.  Kelley writes, “The standard patient appointment time is 15 minutes.  How many of us could do our entire job in 15 minute increments, 25 to 28 times a day?”

Are We Using Evidence Effectively?

Val Jones of Better Health tells us Why She’s Afraid For Anyone to Enter the Healthcare System…Ever.  Val’s post offers resources for patients, caregivers and health care professionals to ensure they are “on the right diagnostic pathway, getting the most appropriate care that suits their needs and preferences, and protecting them from errors and missteps.”

Rheumatologist Irwin Lim, in One Fracture, Two Fracture, Three Fracture…Enough! writes about the need for targeted interventions for high-risk groups…especially patients with osteoporotic fractures that “are getting a surgical fix or a cast, but not assessed and therefore, not treated for osteoporosis…this causes pain, suffering, disability and loss of independence. It also costs….a lot of…money.”

Harold Pollack at Kaiser Health News says in, It’s Not Just About the Money: Cost Control in Cancer Care, that providing evidence-based care is greatly impacted by incentives promoting aggressive care.  He writes that “We all must face these issues to control costs…We can treat our loved ones, and ultimately ourselves, more effectively, more efficiently, and more decently than we often do.”

Family physician Ed Pullen at DrPullen.com struggles with how to best reduce morbidity risks when facing contradictory recommendations for care.  For example, he wonders how to weigh concerns about PSA screening asking “Is there more morbidity related to treating cancer long before symptoms develop, or is there more morbidity from treating cancer after symptoms appear?”

On Pizaazz, Glenn Laffel argues that while no one would dispute screening and prevention as potentially useful tools in the effort to improve the quality of care and reduce unnecessary costs, not all such programs actually work.  Screening for prostate cancer, spiral CT screening for lung cancer, colonoscopies, and ECG screening for high school students, to name a few.  He says, “Some screening and prevention programs are not effective at all.  Others are effective, but prohibitively expensive.”

Gary Schwitzer, of HealthNewsReview, in two posts about using robotics for surgical procedures, raises questions about its use despite many questions about its benefits, harms, and increased costs.  Gary asks, “How are patients to make informed health care decisions and weigh evidence fairly if the information presented is not whole?”

Alexander Friedman adds in his post, My Patient Needed to be Delivered, that cesarean section rates are on the rise due to standard use of fetal heart monitors.  Friedman says that although it’s an “appallingly poor test,” nearly all American mothers are monitored during labor.  Yet, in his experience, almost every time he performs a C-section based on the warnings of distress from the monitor, the baby is delivered “pink, healthy, and a little bit angry…our medical culture prizes technology and tests, even if they don’t work and can cause harm.”

With several recent deaths in Oregon from attempting at-home breech deliveries, Jonie Dawning, an experienced midwife, believes that too many midwives are unaware of the potential risks involved.  In her letter to the Oregon State Legislature, she makes the case for an evidence-based care and policy approach.

Wilderness medicine expert Paul S. Auerbach acknowledges that antibiotics are overused to treat childhood ear infections. But when in an outdoor or wilderness setting, where there is no medical professional to help make the decision, he advises that it is certainly reasonable to administer antibiotics.

Using Evidence for End of Life Care Decisions

In response to a recent NYTimes piece on rising Medicare hospice costs and the role of fraud in the phenomenon, Chris Langston, of The John A. Hartford Foundation HealthAGEnda blog, offers a primer on hospice in the first of a two-part series. With the current budget-cutting environment, Langston “worries that we will make a mistake that will deprive people at the end of their lives of valuable services and that we could even unintentionally increase total health care costs while trying to lower them.”

On GeriPal, Eric Widera shares that “despite a lack of evidence to show any benefits to prevent aspiration pneumonias or pressure ulcers, improving comfort, or prolonging life, feeding tubes are still inserted in patients with advanced dementia.” Widera wonders if family members have unreasonable expectations about the benefits of feeding tubes and specifically if they know that “40 percent of tube fed individuals must be restrained to keep feeding tubes in place.”

Ryan DuBosar, on ACP Hospitalist blog, highlights a recent report from the Center to Advance Palliative Care, noting that nearly two-thirds of all hospitals now have a palliative care program and larger hospitals have even more access. These palliative care teams can help patients and their caregivers when facing a serious illness and making difficult choices.

Receiving Patient-Centered Care…Not Always as Expected

Clinicians, family members and sometimes even strangers can all play a role in providing patient-centered care.  Sometimes you get the support you need…at other times, there is a gap between what you need and what you receive.

Amy Berman, of the John A Hartford Foundation HealthAGEnda blog, shares her experience with what she believes was an overly aggressive treatment recommendation in Can Good Care Produce Bad Health?.  She says, “It doesn’t matter if care is cutting-edge and technologically advanced; if it doesn’t take the patient’s goals into account, it may not be worth doing.”

Posting a sick kid’s photo on Facebook led to the swift diagnosis of a dangerous, fast-moving illness. David E. Williams, in the Health Business Blog, explores the role of social media and crowd-sourcing in his post, Diagnosing an Illness with Facebook.

Beth L. Gainer, of Calling the Shots, recognizes the compassion and support she received from unexpected sources after she received her breast cancer diagnosis and during her treatment in her post, Heroic Moments.

We hope you enjoyed this week’s Grand Rounds.  It was wonderful to read so many posts related to such an important and lasting issue.  Thank you to everyone who submitted a post and to those whose posts we happened upon and included above.  Please be sure to check out next week’s host, James Logan, MD at http://jamesloganmd.com.

Guest Blog: Making Hard Decisions Easier

Amy Berman
Monday, June 13th, 2011


Amy Berman is a Program Officer for the John A. Hartford Foundation. She heads the Foundation’s Integrating and Improving Services portfolio, focusing on the development and dissemination of innovative, cost-effective models of care that improve health outcomes for older adults. More of  Amy Berman’s posts can be found/followed on the Hartford health AGEnda blog. You can follow her on Twitter @NotesOnNursing and follow the John A. Hartford Foundation @JHARTFOUND.

Shortly after I was diagnosed with inflammatory breast cancer a scan showed a hot spot on my lower spine.  Was it the spread of cancer?  My oncologist scheduled a bone biopsy at my hospital, Maimonides Medical Center, in order for us to find out.

 The author and her mother, June 2011

The author and her mother, June 2011

A few days before the procedure, I went in for preadmissions testing.  As part of my formal intake, in addition to collecting my insurance information and poking and prodding me a few times, the nurse asked me if I would like to fill out an advance directive. This was not because she was a miraculous oracle who knew the outcome of my biopsy, which would leave me with a Stage IV  diagnosis. No, her question was merely standard procedure.  I said yes, and shortly, a specially trained social worker arrived to walk me through the process.

A cheerful young woman reminiscent of a camp counselor sat down next to me with papers neatly attached to her clipboard.  The first step, she explained, is appointing a health care proxy, someone you trust to make health decisions for you should you become incapacitated.  Being a nurse, I knew this, but it was comforting having someone there with me while I filled out the form. I chose my mother.  Since my diagnosis, she and I had had numerous conversations about what I wanted should my disease progress and take away my quality of life. I trusted that she would respect my wishes, even if that meant making painful decisions as my disease progresses.

Physician Orders for Life Sustaining Treatment Advance DirectiveThere is another form of advance directive that I haven’t completed yet—but will—with the assistance of that same social worker.  It is nationally known as the POLST or Physician Orders for Life Sustaining Treatment.  Developed in Oregon and disseminated by the California Healthcare Foundation, POLST turns the treatment wishes of seriously ill individuals into physician-signed medical orders that the health care team must follow.

At the moment, I feel fine. I would want to be resuscitated, intubated, hydrated, and whatever else was necessary to get me back on my feet. Once the cancer begins to seriously compromise my health, however, I will fill out the POLST with instructions to limit my treatment to comfort care only.

Talking about our wishes when we are dying is hard.  It’s hard for patients, families, and health care professionals.  I look at the POLST form as a way of lightening the load on my family and on my health care team by informing them in advance of my treatment choices.  It also offers the added bonus of ensuring that the treatment I get is the treatment I want, not what others think I want.

Even though filling out the POLST is reserved for those at the end of life, I believe everyone should know what is in it. It makes a great starting point for discussions with the friend or family member you intend to appoint as your health care proxy—which everyone, even the young and healthy, should do.

After discussing the POLST form with me, my mom said that she never knew you are allowed to refuse antibiotic treatment for pneumonia and other infections at end of life. While I am not suggesting that everyone would choose this, I would prefer to limit prolonged suffering.  My mom would as well.

Once I filled out my health care proxy form, the social worker advised me that it would stay on file at the hospital and with my oncologist. She recommended that I give copies to my mother, my primary care physician, and anyone else or any other institution involved in my care.  (And as a reminder, Mom, I keep a copy in my top dresser drawer.)

The social worker left me feeling empowered and positive.  Later that week when I found that cancer had in fact spread to my spine, I was comforted to know that the care I will receive will be the care I choose.  In my remaining lifetime I would like to see more hospitals, oncology centers, and nursing homes adopting Maimonides’ wonderfully integrated approach to advance directives. They didn’t wait until I had the terminal diagnosis or was hooked up to machines in intensive care, when health care decision-making is fraught with stress and fear, to ask. Instead, they made it part of their routine and trained a staff member to work with patients and explain the issues.

Why can’t this practice be more widespread? Why can’t all other patients in my position and all older adults have access to this vital yet simple service? Why do policymakers advocate for patient-centered care while letting “death panel” nonsense stifle the conversations that would help patients make informed treatment decisions?  The expense is minimal—some forms and one terrific social worker—but the peace of mind it affords patients is priceless.