Big Caregivers Don’t Cry

Raindrops
Originally uploaded by Joolz Perry

The hospital case was a difficult one: a dying mother with seven school-aged children, an angry husband, and the patient’s sister who constantly clashed with the husband over medical decisions once the patient could no longer make her own.

It was a perfect case for Schwartz Center Rounds, a program now taking place at 195 health care facilities across the country, where caregivers talk about cases like this one, challenging for emotional – not medical – reasons.

These were the inaugural Rounds for United Hospital in St. Paul, Minnesota and hospital chaplain Verlyn D. Hemmen, who facilitated the session, told me that they were a huge success, with about 120 doctors, nurses, social workers, administrators and others in attendance. (I have changed some of the details to protect confidentiality.)

One of the issues that came up was the appropriateness of caregivers crying in front of patients and families. A member of the panel presenting the case recounted that at a family conference, the patient’s sister had gone around the room pointing at different caregivers and telling them whether they could continue to care for the patient, depending on whether she had seen them cry about her sister. She pointed to one doctor who she had not seen crying and told him she no longer wanted him involved in her care because he had not been appropriately emotional.

Verlyn said that story led to a lot of discussion about whether caregivers who show emotions are crossing a professional boundary that should not be breached. By and large most attendees agreed it is absolutely appropriate to display emotions in front of patients, without seeming hopeless or “falling apart.”

Verlyn said one veteran nurse began crying as she recounted the case, and she was shocked at her reaction. “Like many of us, this nurse sees herself as a professional, able to move on, but our bodies and emotions don’t always see it the same way,” said Verlyn. “I don’t think she realized how much emotion she was storing. This is what makes Rounds so crucial. They are an opportunity to identify, acknowledge, express and normalize these difficult emotions and find out that we are not alone. Caregivers need to process these hard cases because they don’t go away. ”

Verllyn said lots of other issues came up during the hour-long Rounds session, including the lack of psychosocial support in the Intensive Care Unit for the patients’ children as they witnessed the process of their mother dying.

What do you think about crying in front of patients? Is it appropriate?

The Balance of Power Between Patient and Doctor

I like it when things that seem intuitive turn out to be true. A study just published in the Journal of Internal Medicine confirms that when doctors and patients have different ideas about the proper balance of power in their relationship, compliance suffers.

The researchers looked at how well patients with both diabetes and high blood pressure managed their diseases through the prism of their relationships with their doctors. When patients believe that they should have more control over their health than their doctors believe they should, they are less compliant with their medications.

"Frustration is one likely reason for this,” said lead researcher Alan Christensen, Ph.D. “If they're not getting the control they expect or prefer, they become less satisfied with the health care they receive and react to that loss of control by being less likely to follow the doctor's recommendations, including filling refills.” I hear the parents of young children among you grumbling, “they needed a study to figure that out?”

This has important implications for the whole notion of patient-centered care. Christensen puts it well: “There's currently a movement toward patient-centered care, which gives patients the opportunity to be more involved,” he said. “This is often a good thing, but it's also important to remember that one patient's empowerment is another's burden,” he said. "Some patients like to receive a lot of information about their condition and prefer to be a leader or equal partner in making decisions about their health. Others would rather just have the doctor sift through the information and tell them what to do.”

I believe that the important thing is for doctors to ask their patients how active they want to be in their own care. And this meeting of the minds relates to communication styles as well. Oncologist Tom Lynch, MD, the chair of the Schwartz Center’s board of directors, asks his patients how much information they want so he can communicate in a way that is comfortable for them. “There are some patients who like to know all the gory details, statistics, and curves, and there are some patients who like just the broad brushes of what this disease might mean,” he says. “Where do you fall in that group?” he asks new patients.

Have you ever had a doctor ask you that?

Health Reform: Balancing Access & Costs

They say that timing is everything. With the recent passage of federal health care reform, the timing and topic of our annual breakfast for healthcare /life sciences attorneys couldn’t have been more appropriate.

Last Wednesday, 4/14, Eric Schultz, Schwartz Center board member and President CEO of the highly regarded health plan, Harvard Pilgrim Health Care, presented his perspective on the impact of health reform on costs and the implications for patient-caregiver relationships.

Eric supports federal health reform as a way to expand coverage to the uninsured however he raised concern that more work needs to be done to address costs. Eric identified four areas that must be considered to control costs as we move forward:

1. Medicare Reform. As the single largest payer, Medicare policies have a huge impact on overall health costs. Eric questioned whether it makes sense to eliminate the Medicare Advantage program which, unlike traditional fee-for-service Medicare, pays a set amount of money to participating private health plans for each enrolled individual.

2. Fee for Service Payment Reform. Fee for service medicine can create incentives that lead to decisions which increase costs and are not in a patient’s best interests. Eric recounted the story of his elderly aunt to illustrate his point. Last year his family decided to keep his elderly aunt, an Alzheimer’s patient, in the nursing home after her health suddenly deteriorated. His family made their decision based on wishes previously expressed by his aunt; however, his aunt’s physician contacted the family and suggested rethinking their choice. The physician wanted to conduct further testing, assuring the family that cost would not be an issue because of Medicare reimbursement. The family remained firm. Eric’s aunt died peacefully five days later, according to her wishes, illustrating how less intensive care can be compassionate.

3. Increased Consumer Engagement. Eric suggested that physicians and patients need more complete clinical information to make better decisions. When data is incomplete it can result in bad decisions for patients.

4. Address End of Life Care. Hospital and physician costs for care administered in the last months of life approach $50 billion per year. Eric cited estimates that suggest twenty to thirty percent of these expenditures brought little or no value to the patient care.

We thank Eric for sharing his insights with us. He skillfully outlined how compassion and cost control can coexist in health care. Let’s continue this conversation. How would you balance the issues of cost control and expanded coverage?

Advocate for Quality and Safety to Lead Medicare and Medicaid

Pending Congressional approval, Don Berwick, MD, will soon be running the Medicare and Medicaid programs and I count myself among the many people who think this is an inspired appointment. For those of you who don’t know Don, he is a pediatrician by training and a crusader by calling. He is the founder and CEO of the Institute for Healthcare Improvement (IHI), a nonprofit he founded almost two decades ago, which has become a formidable force for improved quality and safety across the entire U.S. health care system.

The IHI and the Kenneth B. Schwartz Center are kindred spirits, with complementary missions: a big piece of the quality puzzle is improving caregiver-caregiver communication – an area the Schwartz Center dedicates much time and effort to. Don is also a huge proponent of patient-centered care and he spoke a lot about that when he headlined the Schwartz Center’s Speaker’s Series last spring. Like many reformers, Don is sometimes accused of taking things too far – in particular his notions of patient-centeredness. In a Health Affairs article “What ’Patient-Centered’ Should Mean: Confessions of an Extremist,” he envisions health care systems where patients, not physicians, call the shots. Decision-making would truly be a joint venture between patients and caregivers and medical records would belong to the patient: no more asking permission to access them or calling the doctor’s office for lab results. And the word “compliance” would be banned from the health care lexicon.

With Berwick at the helm of the Centers for Medicare & Medicaid Services, you can be sure that the emphasis will be on delivering safe and effective care in the most efficient way possible - with you-know-who at the center.

Cancer Garden Blooms in Boston

dripping
Originally uploaded by Ian's Art

After her last chemotherapy session, a woman I know named Alison threw a celebratory brunch for 85, followed by a bulb planting session in her yard. I thought it was the perfect ritual on so many levels, expressing hope for the future, the importance of life's simplest pleasures and the healing power of getting dirty in a garden. I imagine that every year, when the bulbs push through the earth, she is reminded of this joyful anniversary and her celebration with the people most important to her.

The Cancer Garden of Hope takes Alison's idea into a public
space, City Hall Plaza in Boston. The garden is raising money for 12 nonprofits that benefit cancer research and survivors, including the Kenneth B. Schwartz Center, by selling flowers, engraved bricks and marble plaques. Bricks and plaques will be engraved with a personalized message from the donor.

The garden is the brainchild of the Conquer Cancer Coalition of Massachusetts, an organization started by Susan Zuker and her two sons. Susan is one of the most passionate and inspiring women I know. She started the organization, which provides funding to organizations working to conquer all forms of cancer, after her husband Michael passed away from lung cancer in 2003. If you’ve ever seen a Conquer Cancer Massachusetts license plate, you can thank Susan and her sons. They got enough people to apply for these specialized plates that the Registry of Motor Vehicles agreed to produce them.

I love the idea of the Cancer Garden of Hope and think they should bloom all over the country. I could imagine hospitals doing smaller versions of this as a fund raising project. Do any of you know of anything similar to this?