Planetree Tool to Explain and Invite Patient Partnering Published in BMJ

The BMJ has just published, as a response to a British Medical Journal editorial, An Invitation to Patient and Family Engaged Care for Consumers: What it is, Why it Matters and How Patients and Families Can Engage.

This short document, of which I am listed as a co-author, explains the concept of patient engaged care, describes and briefly summarizes the Planetree – National Academy of Medicine framework synthesis of the research into the impact of this approach, and perhaps most importantly, then specifically welcomes and invites patients to become engaged and partnering team members.  (Note that my blog, attempting to summarize the very rich and detailed original Planetree-NAM paper, into which I had some input, is here.)

The BMJ response includes our offered model “Dear Patients & Families” letter, which could be used by medical institutions to explain, welcome and support full engaged participation.

For example, it references and summarizes the research as follows:

The good news is that research shows that patient and family engaged care leads to better relationships between you and your healthcare providers. It helps keeps patients safe. It reduces healthcare costs and keeps people from being unnecessarily readmitted to the hospital. Patient and family engaged care makes healthcare staff feel more connected to the work they do, which makes for a better experience for everyone.

Some of its specific invitations  and suggestions to patients are as follows:

  • On your next visit to your healthcare provider, ask them if they have seen the framework for patient and family engaged care. If not, direct them here: https://nam.edu/pfec.
  • Ask your healthcare provider if there is a way for you to be involved in improving care. For example, ask if they have a patient-family advisory council.
  • Ask to be part of the organization’s leadership or government team. Ask if patients are included as board members, for example.
  • Ask to be with your loved one at all times, if they want that. Question why there are restrictions to visiting patients. If having visitors is not beneficial to your healing process, enlist the support of your care team to set parameters for guests.
  • Ask that a Care Partner or family member be present and engaged for all conversations about your health.
  • State your feelings. They matter just as much as your physical condition.
  • Get involved in research. Ask about how your condition is being studied and how you can help.
  • Let your care team know how you like to receive information.
  • Ask to see and contribute to your medical record. If you don’t understand what you read in your medical record, ask questions until you do.
  • Tell your care provider what your health goals are – in your own terms (for instance, being able to walk up a flight of stairs, being able to play with your grandchildren without getting winded, etc.)
  • Come to doctor’s appointments prepared. Bring a notepad with questions, your medication list and any other pertinent personal healthcare information.
  • Create a medical biography about yourself. What conditions and medications have you had in the past? What are you currently experiencing? What are your goals for the future?
  • Act like you belong. Be a teammate, not a subject.

I think the last one, “Act like you belong. Be a teammate, not a subject,” sums the whole approach up perfectly.

I very much hope that medical institutions will want to include this letter in their intake, on-boarding process for new patients, and to encourage staff to use its suggestions as a framework for discussions with patients about a team approach and its specifics. It, together with the underlying NAM framework, could also be an excellent too for staff training at all levels on how not just to have an engagement discussion, but to make all discussions team discussions.

If this approach because a standard in most institutions, then we will truly be on the way way to a greatly improved system.

P.S. Working with Planetree on this has been a great honor and opportunity.

Damage Done By Bad Relationships Between Care Team and Patient — Partnering Lessons

A recent Israeli study of NICU rudeness by parents toward staff, reported in the New York Times, found:

[E]ven [ ] mild unpleasantness was enough to affect doctors’ and nurses’ medical skills. Individual performance and teamwork deteriorated to the point where diagnostic skills, procedural skills and team communication were impaired and medical errors were more likely, compared to control scenarios in which the mother would just say something general about being worried. The team’s ability to perform in critical medical situations with sick babies was affected for the rest of the day, the findings suggest.

and, as with a study focused on unpleasantness from medical staff:

Both studies were done in Israel, but the impact of rudeness does not seem to be culturally bound, a concern that was raised in the initial study design. “Israelis are not deemed to be the most polite people in the world; they say what’s on their mind,” Dr. Bamberger said. “The evidence suggests that even in a somewhat rude society, it still has an effect.”

I doubt that very few of us, when we are even a bit brittle with our caregiving team, realize that we may be impacting not only our own care, but those of others (who may indeed respond with additional rudeness.

It turns out that one approach to minimizing he effect on the care team is to provide training to raise the response threshold, such as by showing and categorizing pictures of angry faces.

To my mind, one of the great benefits of a patient partnering approach is that by humanizing patients and the team to each other, it makes it much less likely that rudeness or insensitivity will escalate.  Rather, the recipients will put the behavior in context, understand the overall situation and history, and respond in a lower key way.

Best of all, maybe folks will learn to use this as learning opportunities, making themselves vulnerable, and ultimately increasing their ability to partner.

It would be nice to think about how to change the intake and patient team process to acknowledge the stresses, and to create a culture in which honesty is requested and appreciated.  I suspect that much rudeness is rooted in powerlessness and fear that any serious attempt to obtain an improvement will be rebuffed.

As the Times article concludes:

But it’s critical for the members of the medical team to be aware of the risk and to acknowledge the problem, Dr. Riskin said, in order to help protect one another and deliver optimal care.

“We are human beings; we are affected by rudeness.”

 

 

An ER Specially for Cancer Patients — Created Thanks to Patient Partnered Input

A couple of days ago, I had an acute pain incident and was trying to decide if it might be heart or stomach related — either a possible but probably not likely byproduct of my medical situation and treatment.  I (correctly it turned out) did not call in because I did not want ER hassle.  But now I know that my hospital, Hopkins, has a relatively new service that would have fit the bill — and indeed one set up at the urging of a fellow member of the  Hopkins Oncology Patient and Caregiver Advisory Council.   The Cancer Urgent Case service is described in an article in the Baltimore Sun, here by Meredith Cohn.

Most cancer patients going through treatment struggle with pain, fevers and nausea, sometimes severe enough to send them to the emergency room.

But the chaos of the emergency room and related stress are “an assault on your well-being,” said Richard Dean, who took his wife many times while she was battling ovarian cancer six years ago. He told Johns Hopkins Hospital officials they needed an urgent care center especially for cancer patients.

“Anyone who gets cancer discovers it’s just a messy disease,” Dean said. “Your white blood count runs down, you get a fever, and you’re at really high risk for infection and you go sit for hours in a waiting room with a bunch of kids with the flu.”

Hopkins listened and, using some patient data crunching from Dean, who teaches engineering at Morgan State University, launched a cancer urgent care center in 2014 in space adjacent to where chemotherapy is delivered. The Hopkins center is open 12 hours a day during the week and plans to open on Saturdays starting in March.

The center now sees about 10 patients a day — about 3 percent of those Hopkins treats for cancer on an average day — and most go home after a few hours.

“We knew sending our patients to the emergency room was not in their best interests,” said Sharon Krumm, director of nursing administration at the Johns Hopkins Kimmel Cancer Center. “If they have a heart problem or a stroke, yes, it’s a good place for them, but that’s not what was happening.”

The urgent care center’s patients don’t just get better, more efficient care, Krumm said. A study released this week suggests that avoiding hospitalizations is significantly lowering costs for patients and reducing the burden on the health care system.  .  .  . Hospitalizations accounted for up to 46 percent of the patient’s bill. The study found that among a group of patients at Hopkins, the average number hospitalized was cut in half after the center opened.

The article concludes with a great explanation of the need for patient partnered care.

Dean said his wife always wanted to be at home in her own bed in Columbia. Now serving on the Hopkins Patient and Caregiver Advisory Council, Dean crunched patient data to suggest how many beds the Hopkins center would need and how it should be staffed.

His wife died before the Hopkins urgent care center opened. But his daughter Samara, who also was diagnosed with ovarian cancer, has visited the center.

Dean called it comforting just to know the center was there and looks forward to it adding weekend hours. He’d also like to see community hospitals pool resources to support a center if they can’t manage one on their own.

“Patients and caregivers really become the experts on what it’s like to live in a system,” he said. “I have great regard for the folks at Hopkins, but they don’t have the eyes that I have. When you’re in the system you can see the gaps. And now a big gap is being filled.”

As described in the article, there are now ten such cancer urgent care centers in the country. What we, as patients, need is so different from general ER services — and not just a shorter wait.  Our needs are more focused, more comprehensive, and with different likely tests upon arrival.  Interestingly, upon arrival we probably often present as much less urgent than others arriving.

The potential impact for this kind of service is graphically highlighted by a recent story in the New York Times about the emerging knowledge of the risks of immunotherapy.  One individual’s story, which would surely have been very different with a capacity like the one described above is detailed here.

Mr. Peal, an engineering technician who tests the performance of helicopter parts, started taking nivolumab and ipilimumab [new immunotherapy drugs] on July 8. Dr. Kluger [at Yale] told him he might feel drowsy or nauseated, or he could get a rash. A rash indeed struck with a vengeance on Aug. 30: red welts from his knees to his waist. On Sept. 1, a Thursday, he visited Dr. Kluger’s office, where he was given a steroid.

The next day, he had a fever, nausea and was “dying of thirst — like beyond being in the desert,” he said. He threw up everything. His girlfriend, Jo-ann Keating, called Dr. Kluger’s office, and an on-call doctor prescribed an antinausea drug. Later, Ms. Keating called back to say it was not working, and he was prescribed a second antinausea drug. By Sunday morning, Mr. Peal, unable to move, took an ambulance to the emergency room.

In his wallet, he kept an information card published by Bristol-Myers Squibb. It lists dozens of risks, including that the therapy “can cause serious side effects in many parts of your body, which can lead to death.” Mr. Peal’s family told the emergency room doctor about the treatment, Ms. Keating recalled.

“The doctor kept on saying he was on chemotherapy,” she said. “I said, ‘They’re calling it immunotherapy.’ He went on his phone and started looking for information.”

But even Dr. Kluger’s experienced team, which answered the distressed phone calls that weekend, was caught off guard and did not react immediately to the symptoms.

“It took us by surprise. He looked absolutely fine on Friday,” Dr. Kluger said. Part of the problem, she thinks, is that Mr. Peal was relatively new to the clinic, and so she and her staff members did not have the experience with him to accurately assess his symptoms. “It also happened very quickly. It spiraled within hours.”

Ultimately, Mr. Peal spent 24 days in the hospital, where trouble mounted. First his pancreas failed, then his bowels inflamed and his kidneys became dysfunctional, and “to top it off, he has a fever of 103 for which we can’t find a source,” Dr. Kluger said in an interview during the crisis. She was trying to figure it out and had emailed other experts around the country to see if they had ever had a patient with this combination of acute immune reactions. No one had seen it before.

Even without a formal new service, its clear to me that those in research trials should have not-understood side-effects responded to quickly, in case they escalate.  I would think that protocols for this should be established or rather tightened.