In the morning, I attended the patient advocacy meeting, a gathering of more
than 30 bladder cancer survivors who have become active in advocating on behalf
of bladder cancer survivors. The common thread – seeking help and support from
bladder cancer – quickly bound us together. There were a number of people in
attendance who are frequent commenters on BCAN’s Inspire site, including
Cliffsider,
MargePA,
Karego.
Survivor’s working group meeting
In the afternoon workshop, we brainstormed to identify projects that the members
of the working group could undertake and accomplish in the next year. Ideas discussed
include:
Travel info: Providing information to help people traveling
with ostomy bags or saline
Elevating BCAN’s visibility: BCAN is #63 on google search
for “bladder cancer”. [This probably is because BCAN blocks Google’s search
engine crawlers (robot.txt). Andrea and Stephanie have been made advised and
will correct it.] Search for “bladder cancer support group”: BCAN is first
result.
Better support group: How to start a support group on BCAN
web site.
Getting BCAN info into urologist’s offices. Discussion of reasons
for resistance.
Training urologists during residency and fellowships to know
about BCAN and support groups
Insurance – giving patients info about insurance coverage: “triage
cancer” training.
Clinical trials: providing better information on finding
relevant clinical trials.
Keystone session
All the attendees introduced themselves. (I said I was “a
poster child for immunotherapy. Metastatic for more than 5 years, no evidence
of disease for more than two years.” That got some applause.)
Speaker: Dr. Timothy Gilligan, Director of Coaching, Center
for Excellence in Healthcare Communication, Cleveland Clinic, “Using
Relationship-Centered Communication to Transform Healthcare, Our Organization,
and Ourselves”.
Dr. Gilligan’s early slide: “Warning: people are closer than
they appear”. Too often we stay in safe spaces. But relationship-centered
communication focuses on the relationship. It considers the impact of the
behavior on the relationship. What is more important? The relationship, or who
is right and wrong, who wins, to scratch the itch, to vent.
Having a white coat and an MD doesn’t mean that patients
should automatically trust you. We need to cultivate a deep and sincere
curiosity about others. Physicians are “explainaholics.” If you explain things
to your attending, you will be rated well. But doctors should think about
listening more.
Doctors pay attention to things that are wrong, out of the
ordinary. If a liver looks normal, a doctor will ignore it. But if it has
lesions, it merits attention. Pay attention t the whole person, not just the
issues.
Doctors talk too much. “Listen skillfully in a way that
encourages others to talk and optimizes your chances of accurately understanding.”
“Respond empathetically to others’ experience. Embrace your
own vulnerability.” Learn from your mistakes, and acknowledge them.
Find out who the patient is now, where they were before
cancer, and how their life has changed with the disease.
Why work on communication? We aren’t good enough at
challenging conversations. Giving bad news. Engaging with and resolving
conflict. Helping people change problematic or unhealthy behaviors.
Communication is about stronger, more authentic
relationships. Understanding and acquiring specific skills.
End-of-life communications. Doctor gave her false hopes.
Each test that came back worse deeply harmed patient’s resilience. Why was
everyone saying it would be ok and it wasn’t?
Patient wrote about how cancer helped him focus his life
while his days were prolonged. Helped him be a better person.
Informed consent. NY Times article on how informed consent
was a sham. Letter from PhD about how he was bullied by his doctors. Doctors
think that patients forget more than half of what they tell them, and less than
half of what they remember is inaccurate. They don’t know who is in charge of
their care.
Patients want to know that their doctor cares about them.
They forget their humanity. In an ER, the doctor doesn’t show empathy, it’s “what
is your pain on 1-10”. Remember your empathy.
A hospital or clinic is a foreign environment to patients,
but it’s the home of doctors. Put your patients at ease. Connect, listen
without controlling the conversation. Learn how to recognize, identify and
respond to emotions. Respond constructively to difference, disagreement and
conflict. Communicate in such a way that the listener understands and
remembers.
Book, “Communication the Cleveland Clinic Way.” REDE:
Relationship, Establishment, Development, Engagement. Crying is a normal
patient response to bad news. Empathy. We practiced with case studies. We told
the facilitators not to teach, but to facilitate a good leaning environment
from each other.
Boissy A, et al (2016) JGIM: Findings included better communication,
empathy increased, no decrease in quality.
Healthcare is filled with difficult conversations.
David Bowie quote of what he tried to do in light of his
terminal disease: His life was spent writing songs about loneliness, isolation,
relationships, connections. “That’s about it.”
Key practices for a relationship-centered organization: Put
relationships first. Culture change. Parallel process (walk the talk). Curiosity.
Listening (instead of talking). Paying attention to power and hierarchy (being
at the bottom of the hierarchy is bad for health; from the top, everything
looks fine).
Let the patient set the agenda. Do shared decision-making. The
doctor has special expertise; the patient has expertise in living in the body.
Transparency. How often is it something is there but not
discussed. Cancer mortality, for example.
Empathy. Cartoon: “Sorry your head hurts, sweetie. What can
I do to help you shut up about it.”
4 Powerful Question for Teams:
1.
How does the way I do my work help you do yours?
2.
How could I help you in doing your job
3.
Where are our efforts aligned?
4.
How can be do better in working together?
What realm are you in? Emotional vs. Cognitive. So often in
medicine, he hid emotional issues in cognitive analysis. How long have I got to
live is an emotional question, motivated by fear. New Yorker cartoon of death
at the apartment door: “Don’t freak out. It’s just a save the date.”
What is the current climate in medicine? It’s a difficult
environment. More and more are burning out. Mayo Clinic article burnout of doctors
2011-2014. Burnout is increasing, job satisfaction is going down.
CREW: Civility, Respect, Engagement in the Workforce. VA
study. CREW helps engagement, outcomes, happiness. Open ended assessment: I
feel appreciated when … Implementing CREW significantly improves workplace
satisfaction.
How we communicate in relational coordination makes a
difference. Frequent, timely, accurate, problem solving, with shared goals,
mutual respect These factors help improve quality of care, shorten length of
stay, and postop pain.
If we took greater responsibility for how we treat each
other, and respect each other.
Key points; Communication matters. Communication skills can
improve with structured practice and skilled feedback.
It must be woven into and supported by organizational
culture.
“When you try to control, you lose the opportunity to
influence.”
Q&A:
Q. How to implement this with EMR systems, when docs need to
document everything?
A. It’s hard. Times are tight. Scribes. More organizations
are pulling docs out and training them because it works. Story of happy clinician
who persuaded his hospital to pay him part time, and he would spread his
patients over a full-time schedule.
Q. 90-95% of your slides can also apply to interpersonal
relationships. The majority of our student’s parents are divorced. How do you
expect kids who grew up in homes with communication problems to learn different
skills.
A. I don’t think that kids with divorced parents are not
worse off in communications. Most of us need help. Role models. Is giving bad
news to patients like breaking up with a partner: it’s not you, it’s me, blah
blah. Learn to own bad news.
Q. How do we have shared decision making with a bladder
cancer patient when they are drinking from the firehose?
A. It is hard, especially with the compressed times that
doctors have. We can delegate, provide written documentation, and apply the
communication skills. Knowing how to graphically display data helps. Visual
tools are much better at communicating info to patients than a verbal download.
Often times that does not work.
Q. What are your thoughts on sharing personal info with
patients? We’re taught in med school to not do it. Can it help?
A. Patients tell researchers that we give too much information.
But a lot of my patients want to know about my kids. I’ll share that. But be
very careful.
Q. I’ve giving similar courses to my residents. I’m struck
with the cognitive vs. emotional. Moving into the emotional is messy and
complicated. Most have learned by doing. How much autonomy do you give to your
residents to do that?
A. It’s hard for faculty to go into a room and watch and a
resident or fellow, and not say anything. I did that for a month – saying
nothing – and my ratings on communication scores plunged. So I changed and
talked more. When practicing tennis doubles at the net, I had the ball machine
fire balls at me and I learned not to duck. We’d practice those questions: Am I
going to die? How long do I have left? Practice the responses. Surgeons don’t
panic at the sight of blood because they have practiced.
Q. From a patient’s perspective, what is the best way to get
a doctor to slow down and get the information from the doctor that I need?
A. We’re moving to a perspective of having a patient as a
member of the health care team. Coming with a clear sense of what you want –
your questions – helps set the agenda. Ask the patient. Knowing that a patient
may have about an 8 oz. capacity, it makes no sense to pour a gallon into the
cup. It’s useless, messy, a waste of time, and frustrating.
***
At the dinner, BCAN co-founder Diane Quale was honored for her tireless work in building and sustaining the organization.
