Category Archives: Health Policy

Becoming The Standard of Supportive Care

August 2, 2017

 Meet William Dale, M.D., Ph.D., the New Arthur M. Coppola Family Chair in Supportive Care Medicine
William Dale, M.D., Ph.D., recently joined City of Hope from the University of Chicago, where he was an associate professor of medicine and section chief of Geriatrics and Palliative Medicine. He completed his medical and graduate school education at the University of Chicago, and his residency in internal medicine and geriatrics fellowship at the University of Pittsburgh. He is a board-certified geriatrician and palliative medicine physician with a doctorate in health policy.

Q: What brought you to City of Hope?

I knew of City of Hope primarily through my association with long-time colleague (Vice Provost) Dr. Arti Hurria. We both have keen interests in geriatric oncology. I also knew of the well-respected Department of Supportive Care Medicine here, which is a rather unique model that doesn’t exist elsewhere. Here, the department brings together so many aspects of comprehensive cancer care under one umbrella: palliative care, social work, psychology, psychiatry, patient education, patient navigation, volunteer services, and the Positive Image CenterSM – 13 divisions in all. It is very rare to have so many disciplines working closely together under one roof. Most places have to pull together multiple providers from several different places, but it makes perfect sense to keep the patient at the center of your care and to know they have a team around them. We do that.

Q: Many think that “supportive care” and “palliative care” are interchangeable terms. Are they?

Palliative care is a holistic specialty that focuses on maintaining a patient’s quality of life and managing their symptoms. Its focus is on maintaining a high quality of life throughout the cancer care journey, including when therapies aren’t available to control the cancer and the patient is nearing the end of life. Hospice care – caring for patients in the last six months of life – is often confused with palliative care. While hospice care is part of excellent palliative care, they are not the same. Supportive care is a broad-based patient care approach, while palliative care is a medical specialty that focuses on preserving quality of life.  Our department is inclusive.

Q: Tell me about your role as chair. What would you like to accomplish?

I envision supportive care at City of Hope being the top program in the world. We already have a unique world-class clinical program. What we haven’t had enough of is scholarship in supportive care, which we are building. I want to bring researchers here, which we’ve already started by recruiting a senior-level director of research we’ll be announcing soon. Also, we’ll have a new concentration on geriatric medicine – the care of older adults. Finally, I have a great interest in models of cancer care. Creating programs for optimally caring for vulnerable patients on a financial foundation of personalized care, integrating oncology and supportive care that is sustainable.

I want City of Hope to be THE place, the standard for supportive care programs.

I want City of Hope to be THE place, the standard for supportive care programs.

Q: How did you come to choose a specialty in geriatric palliative medicine?

I’ve always liked older people! I remember caring for them when I was in an intern in internal medicine – when my colleagues avoided the complex older patients with multiple problems, I liked the challenge these patients presented. In my VA clinic in Pittsburgh, I loved hearing fascinating stories from the old World War II vets. Older people can have quite a few health problems already: They may have several diseases – hypertension, cardiovascular issues, diabetes – and then you add cancer on top of that – it’s a lot to deal with. There are unique challenges and considerations when taking care of this age group.

Q: How do you expect to be involved in research in your new role?

I have always been interested in medical decision making and health services research, which we will build at here. Much of the data we currently have from cancer treatment trials comes from a younger, healthier set of patients. While there are a few older patients enrolled, they are largely healthier patients who don’t represent the majority with cancer. So we often don’t know how a less fit older patient will respond to most therapies – we just have to guess, often causing lots of side effects. We need research that will allow us to make more informed decisions for our older patients, based on better data, and to using interventions and a system of care tailored for them. If we can target interventions that get results that truly improve their functioning and quality of life, then they aren’t in the hospital as often. The older, sicker patients are the ones who currently use the most resources, and tend to be the most expensive – for them, us and society. How can we better care for them? Often, supportive care interventions are the answer.

Q: Is there research you are leading now related to this?

Arti (Hurria) and I are continuing to collaborate on several studies, including a recently submitted National Institutes of Health grant that would build a nationwide research infrastructure for older patients, which also includes my City of Hope colleagues in supportive care (Executive Director Matthew Loscalzo, L.C.S.W., the Lilliane Elkins Endowed Professor in Supportive Care Programs), nursing (Nursing Research Director Betty Ferrell, Ph.D., R.N.), and aging science (Population Sciences Professor Mark LaBarge, Ph.D.). We want to get better, more representative data for these patients who have the highest burden of cancer and other diseases, as well as mentor young researchers to enter the field. Along with the new Center for Cancer and Aging here, which Arti, Mark and I lead, we want City of Hope to be the national leader in this type of research. They can come to City of Hope, and we would have some national level resources we can give them access to.

Q: Did you always want to be a doctor?

As a kid growing up in rural Illinois, with animals always around both inside and outside the house, I wanted to be a veterinarian. But, I’m ultimately a people person, and I wanted to make a difference in people’s lives, so I became a doctor. I’m also a bit of a policy wonk about health care, so I earned a Ph.D. in health policy. Melding my clinical love of older adults with my research love for medical decision making and health services, I look forward to building a department that brings this together.

Q: How are you liking LA so far?

Although I’ve spent my entire adult life in the Midwest, almost entirely in Illinois, I am loving Southern California! My very first job as a 16-year-old in Illinois was as a lifeguard. I loved being at the pool all summer, and spent seven years doing that. During that time, my favorite bands were The Beach Boys and The Eagles, and I fantasized about living in LA!  When this job came open at City of Hope, it was a dream come true from my youth.

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Filed under City of Hope, Decision Making, Geriatric Oncology, Geriatrics, Health Policy, Palliative Care

Medical Health Record: A Personal Journey Down the Rabbit Hole

The Problem

“They told me I had to get the information myself,” she said.

“What? Why?”  I responded, annoyed.

“They said it wasn’t in their computer, and that I’d have to get it myself. They said since you’re a doctor here, you could easily check the computer yourself and get it from medical records,” my wife continued.

“That’s crazy! I’m not allowed to look at the computer records; I could lose my job!  And it’s much easier for them to get the paper records than me! ” I was incensed.

“What do you mean? Can’t you just go pick it up from medical records? The nurse said it would be easy,” she continued.  “Why are you so upset?”

A Learning Opportunity

I felt myself being sucked into a Kafka-esque bureaucratic nightmare, medical-style.  Unfortunately, my premonitions were on the mark – I was going to invest a lot of time, spend some money, and endure significant aggravation in getting the medical records on my son that they had failed to get.  The worst part was THIS WAS MY OWN HOSPITAL where I had worked for the past 8 years, the last 3 as a section chief. I never ask for special treatment, and I was not going to get any special treatment — which meant I was going wrestle with The System like anyone else.

It’s often said that the problems with medical errors are “system issues” not “people issues”.  I would suggest they are both.  A good system, with irresponsible people, doesn’t work.  And good people in a bad system preventing their best effort drives out competence. I’ll keep track of both.

I tried to approach this as a learning opportunity.  As some smart person once said, “’Experience’ is what you get when you don’t get what you want.”

Getting Experience (Instead of what you really want…)

Our twins attend the ChicagoVirtualCharterSchool( http://www.k12.com/cvcs/ ), which is part of the Chicago Public School System.  They require proof of vaccinations.  Getting such proof would seem trivial given that our twins were born in the hospital where I work, our pediatrician is in that hospital, and we have an electronic medical record (EMR).  It was far from trivial.

After checking the electronic medical record for vaccination proof, the nurse tells my wife that although everything else is there, including for the other twin, there is one vaccination – the first one — for tuberculosis (TB) that’s missing.

This would be a system issue(#1).  Somehow, the information about the vaccination, which was very likely done for both twins, wasn’t entered in the computer.  Seems like the right solution is for the doctor’s office to check to medical record, right?  Afterall, they have access and permission to do so – AND I DON’T. Let me clarify this point.  I don’t actually have permission to access my family’s medical records, even though I have access to the EMR.  In fact, I CAN BE DISMISSED FROM MY JOB FOR LOOKING AT THE MEDICAL RECORDS FOR MY FAMILY, INCLUDING MY OWN.  Absolutely, no doubt, on the books, not to be ignored, rule.  No exceptions.

Down the Rabbit Hole  

The nurse said, “You have to go check the medical record yourself.  It should be easy since your husband is a physician and can look it up in the computer himself. Or you can fill out a form to get the records.”  Basically, the nurse was telling my wife to have me do something illegal by looking in the computer. Plus, we were just told they didn’t find it in the records; as a geriatrician, it was unlikely I would have more luck finding the pediatric vaccination records. Further, there was no need for me to fill out any “permission” forms – this wasn’t an “outside hospital”, it was my own institution!  The doctor just needed to request the records be retrieved.  Of course, my wife has no idea this is true, since it seems reasonable enough to ask me to look it up.

So the nurse either: 1) doesn’t know the rules or 2) she does know and doesn’t want to put in the effort to get the medical record.  I suspect both.  One reason she wouldn’t want to do this – it’s a terrible pain to get anything from medical records, and she didn’t want to do that.  Why it’s going to be any less painful for my wife is unclear.  This is a “person issue” (#1) – someone not interested in patient satisfaction.

I explained this to my wife – I certainly wasn’t allowed to check the computer myself; I could be fired for doing so; the doctor’s office has free access to the medical record; we would have to request the paper record and probably pay for it.  The nurse chose to defer that responsibility from the doctor to us.  That was the path of least resistance.

And we were under a time constraint.  Our son would be kicked out of school without his vaccination record, as the regular phone calls made clear.  As we soon discovered, medical records will only promise to make the medical record available in 14 days – after the school’s deadline.  The alternative was to have him get another vaccination, a major inconvenience for us, in multiple time and money-wasting ways, and painful and mildly risky for him.  Given that none of this was really due to anything we had done, that it would likely be completely superfluous, and it might interfere with his education (a bit), the indifference shown was impressive.

First, we tried calling the doctor’s office to get the records themselves.  A pleasant woman put my wife on hold for 10 minutes, discussed the situation briefly, and promised to call back with a solution “right away”.  She did call back — many hours later, on a cell phone and in her car.  We were unable to decipher her message in the garble, except for a vague promise to call back.  She never did.

This would seem to be a “person issue” (#2) for sheer indifference.  It was the job of the person who called us to resolve and situation and return out call.  She didn’t do that.  Perhaps she doesn’t have the resources.  But, since I have my own clinic, I would never do this, so my sympathy for her constraints is limited.

Next, we started working with medical records directly.  Keeping in mind that I’m a physician who has worked in the system for many years, I have little idea how patients would deal with this issue.  I contacted medical records, and I was told the timeline, that there was a form to complete and a fee to pay.  Form was filled out and faxed back, followed up with a phone call to confirm its arrival.  Promise made to call when it was available.  The deadline we had from the school was given, although that did not even get a “we’ll try” comment.

One especially annoying comment on the form says, in essence, that you will be charged about $75 for the records and that the fee is waived for your physician.  That really infuriated my wife, having received official confirmed that this was a service provided to our doctor but deferred to us.  This is a “system issue” (#2) — a reversal of promoting patient satisfaction by pointing out that you are unnecessarily paying for a service.

As the deadline for school approached, I started calling medical records daily to check on the records.  What was especially frustrating was the knowledge that the records were in the hospital basement, almost directly down the elevator from my office, but nobody would help copy them any sooner than the deadline.  Fortunately, we were able to get a delay on the school deadline for a week.  Medical records called, reiterated the fact that we had to pay for the records, and said I could come anytime to “pick them up”.  This is a system issue, no flexibility for extenuating circumstance, (#3) and a person issue(#3) for unwillingness to make an effort.

A Trip to Medical Records

I pessimistically decided I would need a least half an hour in medical records, so I took my only available time, my lunch hour, to make the trip.  I carefully brought a check with the exact amount on it.  Again, I felt sorry for patients and their families, who assume that “pick them up” means they are going to be ready and come on a tight schedule (and are paying for parking by the hour or are tied to a bus/train schedule).  After a long walk through poorly marked grey concrete corridors, I finally found the medical records office in the basement of the hospital.  I was startled to be hit with a stiff breeze from a large fan as I entered, given it was December in Chicago.  The person sitting up front, who seemed surprised to see me, motioned me to a different person in the back of the room to help.

That person asked, “Who are you?” (no “hello” or “how can I help”) – thankfully I had brought my hospital ID – and then, “Do you have your check?”.  She pointed out that, since I didn’t need to have the records mailed, the $5 “mailing fee” was waived.  Since I had already written in the amount I was told, I offered to donate the extra funds.  She seemed surprised and annoyed.  Told me to “take a seat” on the plastic chairs in the office, with no indication of how much longer it was going to take or what needed to be done.  Again, wondering why more time was needed, since the records were presumably ready for “pick up” when they called, I sat down and observed the rest of the process.

My pessimistic guess was right on — it took about 30 more minutes for the records to be produced.  I honestly have no idea what was happening during these 30 minutes.  Nobody ever told me anything.  At some point, the person “helping me”, simply got up and left the area without explanation – I actually wondered if she had simply gone to lunch, but decided not to ask.  Several people came and went, picking things up, and going about their business.  I was about to ask if should come back later (I had a lot to do), when the woman finally walked up, handed me an envelope full of papers, and walked away without comment or explanation.  I opened the envelope to check that the papers looked like what I wanted.

As a left, I turned the wrong way walking about the office in the ubiquitous grey concrete hallways – one of the people from the office smiled and laughed as they pointed the right direction out to me.  It was one of the few comments anyone offered.  Person issue for simple pettiness. (#4)

Aftermath

One thing about medical records: they are full of useless information.  I went through the surprisingly large number of papers and found the vaccination record.  It was a little difficult to decipher, but I found where, indeed, the vaccination was given.  Thankfully, my son wouldn’t need an extra trip to the doctor’s office for a shot, reminding me of yet another “system issue” (#4) – from the doctor’s office perspective, it would have been best if he did need another shot, since they could bill for the visit and we had good insurance. All of this unnecessary time, money, and effort was a consequence of someone’s failure to enter this relevant information in the computer record to begin with.

Lessons learned – Systems and People

1. There are definitely “systems issues” regarding medical information.  Those working in the system need better incentives to provide good care.  The system needs greater redundancy to avoid this waste of time and energy.  The system also needs a better way to deal with problems than kicking it out to the patient and his/her family.  Financial incentives should reward responsiveness to patients, not reward deferring responsibility back to patients.  Those providing the “service” need some sense that their contribution matters.

2. There are definitely “person issues” regarding medical information. Those working in the system need to be nicer and more helpful.  The degree of indifference, bordering on antagonism, is breathtaking. All the medical providers, physicians included, should take greater responsibility for those who work for them.  The nurse’s erroneous recommendation – that if followed would put my job at jeopardy – was unconscionable. At least as problematic, the physician never participated in the process.  We never heard from our pediatrician, who I suspect has no idea what happened.

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