Thoughts on What We Ask of Our Doctors When We Reject Aggressive Cure Attempts

I have been thinking a lot in the last couple of days about what burdens we put on our physicians when we reject aggressive interventions.

Obviously, I am speaking very personally here, based on my deep reluctance to have a bone marrow transplant for my MDS bone marrow cancer.  So this should not be projected directly into other situations, although maybe it is worth thinking about, and even discussing with medical team members.

It is almost easy for me to proudly declare that I am not going to give into medical system pressure, and am looking for quality over quantity of life.  But when I started to put myself in the team’s shoes, it came out like this:

“I am asking you to not deploy the best technology you have to lengthen my life.  That means that you will “fail” at what you have been trained to do, to fight all the way, or at least all the reasonable way.  You will have to watch me die, and try to make that as bearable as possible, all the while knowing that maybe that could have been prevented.  You already know, from your experience, how hard it is experience, and how hard it is to watch.  Moreover, I am asking you to run the risk that later on — too late — you will change your mind.  Or maybe you will just suspect that I have changed my mind, and you will wonder if you had presented information differently, maybe we would not be in this place.”

That is a lot to ask, particularly for those trained in the current governing ideology of medicine.

It does definitely not mean that as a patient, I should not do what I want to be nice to my doctor.  But it does involve an obligation to be sensitive to the impact.

We need to remember that the duty to take care goes both ways in the patient-doctor relationship.

 

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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.