A Patient Partnering Perspective From the London Tower Fire

A general practitioner from the neighborhood near the tower, Ahmed Kazmi, wrote this on the British Medical Journal Blog to describe his visit to an already well-staffed community center:

As a doctor I felt slightly redundant. The centres were very well staffed as so many doctors and nurses had volunteered. I sat down on the floor and played with some children. I didn’t use my stethoscope those hours I was at the centre, but I still feel I was a doctor. I think that sometimes empathy and witnessing someone’s grief are as important a part of our role as procedures or prescribing.

He also noted:

.  .  .  A group of young black Muslim boys, who were fasting themselves, walked around with jumbo pizzas offering everyone slices. A group of ladies arrived to offer face painting for the children.  .  .  It was striking how all of the usual prejudices or divisions, which so frequently surface, were all suspended. People from all walks of life were empathetic and loving to each other. For a period at least people stopped being black, white, Muslim etc and were just “human.” If this type of unity is possible in times of tragedy, I think it is realistic to aim for it all the time.

Sometimes presence and connection is the best, or even the only, healing.  And part of partnering is developing the ability to sense the needs of the other, and find a way to help meet them.  It is also not just about the individual “patient” but of the whole community and environment.  Thank you Dr. Kazmi.

 

 

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A Study of Why People Choose Assisted Suicide Has Important Lessons for Patient Partnering

An important article in the Washington Post should trigger some thoughts.  As the article explains:

But a study released Wednesday in the New England Journal of Medicine suggests the answers may be surprising: The reasons patients gave for wanting to end their lives had more to do with psychological suffering than physical suffering.

The study, based on information from Canada’s University Health Network in Toronto, represents all 74 people who inquired about assistance in dying from March 2016 to March 2017. Most were white and were diagnosed with cancer or a neurological disorder like amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

“It’s what I call existential distress,” explained researcher Madeline Li, an associate professor at University of Toronto. “Their quality of life is not what they want. They are mostly educated and affluent — people who are used to being successful and in control of their lives, and it’s how they want their death to be.  .  .  .  One of the main things these patients bring up has to do with “autonomy.” It’s a broad philosophical concept that has to do with being able to make your own decisions, not being dependent on others, wanting to be able to enjoy the things you enjoy and wanting dignity.

The article cites several other studies that come to similar conclusions.  My first thoguht that the pain issue is easy to grasp, and a clear and dramatic focus of fear for anyone who thinks about it.  My own, perhaps overoptimistic view, is that it is a very rare case in which pain can not be satisfactorily managed provided you have access to the right experts.

But it is not the case that giving people a reason to want to live is viable for everyone.  It depends on the person, on what gives them identity, purpose and satisfaction.  If that is taken away, why on earth stay here, unless you are forced to.

When my sister, back in 1977, when given the news that (at 25) she was indeed dying of melanoma, and quickly, she asked our family physician what would happen if she asked for help dying.  His response has stayed with me all my life:  “That would mean we had failed you.”

That response works at the pain level, but it obviously works at the purpose and satisfaction level.  I would suggest that those dealing with those of us in decline should think about how to start conversations on what provides that satisfaction — and what might provide it as capacities decline.  Hopefully there is then time to learn to take please from things that have not previously given the same pleasure or purpose.

Indeed, the earlier the discussion starts, the better, and it should not be put off until the only short term outcome is death.

 

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.”

 

 

New Hopkins YouTube Video, Patients on “What I Wish You Knew…Sharing Perspective from the Bedside,” Has Many Potential Uses

The new Hopkins video on the expectations of patients will be a powerful tool.  As the link says:

Patients and families from our six Family Advisory Councils were asked a basic question: What is important to you during your health care experience? What do you wish the health care team knew? Each council created a wish list, all with many of the same common themes. Respect, communication, and partnership. These wishes embody the building blocks of patient and family centered care and they serve as a daily reminder to ask ourselves as providers, are we meeting these simple needs to show we care?

As an Oncology Council member who was somewhat involved in the drafting of the list, it really struck me how simple, but massive, the patient “asks” are.  Respect, communication, and partnership.  Of course, the process of gathering these ideas was itself an important clarifying project.

It is my understanding that the video had been primarily conceptualized as a tool to educate doctors and staff.  I would add that, perhaps with some additional framing, it could have great use as a patient-education tool, with the goal of raising expectations among patients.  Such framing might start and end with the hospital making commitments to, and and asking for help from patients to achieve, those commitments, including of course, being explicit when the goals are not met.

We certainly spend time in waiting rooms, when we might be watching videos such as this.  Moreover, as more of the appointment notification and reminder system moves online, why not include links to video like this — ideally with mention of specific steps that patients with improvement ideas might take.

Doctors Asking Patients to Help in the Informed Consent Process

Two doctors at the Cleveland Clinic, Dr. Mikkael Sekeres and Dr. Timothy Gilligan, have written an article in the New York Times explicitly asking patients to partner in the improvement of the informed consent process.  As they put it:

We’ve seen too many patients regret decisions that they made without fully understanding their options, or the possible outcome. We encourage our patients, and our colleagues, to be partners in what are often life-changing decisions about health care.
(bold added)

The article also includes an honest appraisal of how the process can go wrong, and the possible impact.

They offer these specific requests to patients.

■ Ask us to use common words and terms. If your doctor says that you’ll end up with a “simple iliac ileal conduit” or a “urostomy,” feel free to say “I don’t understand those words. Can you explain what that means?”

■ Summarize back what you heard. “So I should split my birth control pills in half and take half myself and give the other half to my boyfriend?” That way, if you’ve misunderstood what we did a poor job of explaining, there will be a chance to straighten it out: “No, that’s not right. You should take the whole pill yourself.”

■ Request written materials, or even pictures or videos. We all learn in different ways and at different paces, and “hard copies” of information that you can take time to absorb at home may be more helpful than the few minutes in our offices.

■ Ask for best-case, worst-case, and most likely scenarios, along with the chance of each one occurring.

■ Ask if you can talk to someone who has undergone the surgery, or received the chemotherapy. That person will have a different kind of understanding of what the experience was like than we do.

■ Explore alternative treatment options, along with the advantages and disadvantages of each. “If I saw 10 different experts in my condition, how many would recommend the same treatment you are recommending?”

■ Take notes, and bring someone else to your appointments to be your advocate, ask the questions you may be reluctant to, and be your “accessory brain,” to help process the information we are trying to convey.

These are all excellent best practices.

Now, it would be easy to throw back at the doctors – “Well, you and your institution should be putting most of these in place anyway.  Why put it back on us?

But I think that actually misses the point.  Implicit in the article and in the request is the understanding that medical systems are not monolithic, and that change comes much faster under pressure.  So I understand this as a request to demand partnership in consent, and to implement the practices that can help ensure it.  I also understand this as a request that patients, and particularly groups such as Patient and Family Care Councils affirmatively campaign for the full institutionalization of these approaches.

Ideally progress through such an approach will help lay the groundwork for other patient-partnering innovations.  Indeed, informed consent is such a great area in which to start because the law is clear, and the only question is about the effectiveness of the process.

P.S.  This also underlines the value of research, and of understanding the process of creating a culture of partnering.  It might be interesting to give these suggestions as a handout prior to the consultation, and to measure hospital staff attitudes to informed consent and indeed to patient partnering, before starting doing so, and again after a few months.

 

The Impact of Public Data About Doctors on the Partnering Relationship

In a development that I would normally welcome without any reservation, the wonderful news and investigation website ProPublica has just launched a new service called “Vital Signs” about doctors.

Today we’re launching a project called Vital Signs that puts the most important information from across all of our health care projects in one easy-to-use place, and can alert you when we get new information or when something happens you should know about right away, for example if your provider is now paid more per patient than 90 percent of peers, which may be a sign of overtreatment or use of more costly services.

Our health care databases, including Dollars for Docs and Prescriber Checkup, have long been among the most popular features of our site, and are a key part of the mission of our data team — to help people use data to make better choices and live better lives. We’ve spent years collecting, cleaning and analyzing data about hundreds of thousands of doctors and other health professionals across several different interactive databases. Vital Signs lets you see what matters most across all of them, and dig deeper to explore even more data.

My only, and highly limited question, is whether there is a risk that patients will look up their doctor and misinterpret the data.  Now, this is much more reliable that a Yelp review, or other subjective info.

So, my answer, is that doctors should all look themselves up, welcome and perhaps encourage questions from their patients about the data, and respond with candor and openness.

In return, we patients have to remember that these kid of tools do not necessarily fully explain data, and that these tools should generally be considered the beginning of a conversation, rather than a replacement for it.

I would also encourage major medical institutions to look at the data and see what might be needed to introduce, explain, and contextualize it.  Indeed, they might find things that they need to know about, but did not!

This all takes time, but in the end it can strenghten partnering, which in the end both saves time and improves quality.

 

NPR Piece on Value of Patient Input Into Research Design

Jill Harrison of Planetree pointed out this nice piece on NPR on the value of bringing patients into the research design process.  It reports on a study testing the approach of classifying and treating malignancies by genetic type rather than initial site.  The report says that the study is having great success in participant recruitment in part because its design incorporated the patient voice.

.  .  .  [T]he researchers who designed the study stopped to ask what would appeal to potential participants. Nancy Roach, a longtime patient’s advocate who lives in rural Oregon, got involved early on, and helped advise the scientists planning this study.  .  .  .

“This is going to sound goofy, but my dad was in advertising,” she tells Shots. “Remember the scrubbing bubbles — Dow scrubbing bubbles? That was my dad. So I grew up watching commercials and thinking about what consumers wanted.”

Roach brought that sensibility to the conferences where the NCI-MATCH trial was being designed. The original plan would have split the study participants who seem to be doing well on the test treatment into two groups. One group would continue the treatment; the other would take a break, called a drug holiday.

I’m not a scientist. I’m not a clinician. I’m there on behalf of patients.” Roach remembers her immediate reaction to that design: “Taking a patient who’s responding to treatment and taking them off treatment? That is not going to fly.”

She correctly anticipated how patients like Nancy Nahmias would have reacted, as they deliberated whether to sign up for the trial.

“I would not have liked that,” Nahmias says. “If it seems to be working, let’s face it, I don’t want to do anything to sabotage myself.”

Dr. Peter O’Dwyer, a University of Pennsylvania oncologist who was involved in the study design, readily admits that “the design had certain attractions, but it clearly had certain flaws.”

As the patient advocate Nancy Roach, points out:

From Nancy Roach’s perspective, it takes a bit of nerve to speak up in a room of doctors and scientists and ask, “Will the results of this study actually help anybody?”

But it’s Roach’s responsibility to ask those basic questions. “I’m not a scientist,” she says. “I’m not a clinician. I’m there on behalf of patients.”

In order to ensure clarity about the extent and stage at which the patient input occurred, I reached out directly to the researchers for some additional information.  This was their response:

Patient input was part of the process from the outset, when the NCI-MATCH trial was still only a concept. A group of cancer research advocates and patients, including Nancy Roach the person quoted by NPR and several others, discussed the pros and cons of the scientific rationale for the “drug holiday” in detail with study leaders, among  various approaches. It became clear that the patients and their advocates were not in favor of this approach. As a result, the idea was abandoned and did not become a part of the trial design, which proceeded to formal and final review by federal regulatory authorities, including the NCI Central Institutional Review Board.