The Incredible Shrinking Oncology Workforce

Bookmark and Share

LC1, the insured lung cancer patient whose search for an oncologist described in
last week’s post, is not alone. If more Americans realized that they might not
find an oncologist or other specialist provider, they could help drive changes
that could remedy the situation.

Studies have consistently shown that cancer is strongly related to increasing patient age. Policymakers, lawmakers, and the oncology profession, are well aware that there is a crisis in cancer care that will escalate as the number of Americans age 65 and over continues to rise. The US Census Bureau projects that the population over age 65 will double between
2005 and 2030. Therefore, overall cancer rates will rise dramatically.

Here are some illuminating specifics from an analysis of supply and demand for
oncologists performed by the Association of American Medical Colleges Center for
Workforce Studies to the American Society of Clinical Oncology (ASCO) on the
Oncology Workforce. The study, which focused on supply and demand between 2005
and 2020, reveals:

  • a 48 percent increase in demand for oncology visits, assuming that there is no change in cancer incidence or use of services, whereas the number of oncologists will rise by only about 14 percent;
  • In terms of availability to see patients, this translates into a shortage of 9.4 to 15 million visits, or 2,550 to 4,080 oncologists (or about one-third of the 2005 supply of oncologists).
  • At the same time, there will be an 81 percent increase in cancer survivors; many of these people will not need regular visits to an oncologist.

How serious this shortage is right now remains unclear. Already, reports of Medicaid patients finding no specialists to see are increasing. LC1 has health insurance and he has not been able to retain an oncologist. So people should not be caught off guard if they have trouble finding an oncologist to follow them.

I asked Thomas J. Lynch, MD, director of the Yale Cancer Center, what he thought of
LC1’s difficulty finding an oncologist. He wrote in an email: “Gosh— this is not
my experience in lung cancer.  The reality is that in 10-20 years we will have
MD shortages in oncology and we will have to develop new strategies to deal with
the ever increasing survivors (good problem to have).  But I am surprised to see
this now.”

Solutions for the Shortfall in Oncologists

Readers may want to think about whether healthcare reform can help fix this crisis
or whether market forces will correct this. Health policymakers need to reach
out to Americans to educate them so they can weigh in about any programs that could potentially change this outlook. Is this a problem in your community?

Oncology care could look very different for many Americans in the coming years.
In addition to work by the American Association of Medical Colleges and American
Society of Clinical Oncology, the Institute of Medicine’s National Cancer Policy
Forum, the federal government’s Health Resources and Services Administration(HRSA) have been examining the issue. All of these groups are thinking about arange of strategies that could correct the situation, including:

  1. Ways to improve recruitment and retention of oncology-related professionals;
  2. New models of care to cancer survivors (some might reduce access to oncologists and have other health professionals follow patients. This is suggested, especially for people receiving palliative care, and family caregivers);
  3. Offering potential oncologists scholarships or loan repayment programs;
  4. Encouraging multidisciplinary cancer care payment models; and
  5. Promoting use of electronic health records as a way to improve efficient delivery of care.
  6. Changing physician reimbursement to encourage care for Medicaid patients.

What do you think about some of these plans? Do you know of any specific programs that could help people who develop cancer who may not be able to find an oncologist? What about patients on Medicaid, or patients without insurance?

Is There An Oncologist In the House?

Bookmark and Share

Imagine, if you will, that you have early (stage 1b) lung cancer, that you think you have good insurance, and that you cannot find an oncologist to follow you. That’s the story of a 55-year-old man, who asked that I call him “LC1.”

About one year ago, LC1 had a lung biopsy at an academic teaching hospital. The surgery “got it all,” according to LC1’s surgeon, and further treatment was unnecessary. That meant, chemotherapy was not in the cards and that he would be followed with regular scans to be certain that there was no recurrence. LC1 remained in the hospital for about a week to recuperate. Just moments after they took his chest tubes out and LC1 was preparing to go home, an oncologist came to his bedside, leaving this nugget: “I’ll see you in a few weeks. We need to talk about chemotherapy.”

LC1 was astounded. How was it that he was there for days on end and he and his family thought that the worst was over? LC1 could not comprehend why his surgeon and oncologist were on a completely different page. As he learned later, his cancer was categorized as stage 1b nonsmall cell lung cancer, a category of early lung cancer where there is disagreement about the benefits and risks of chemotherapy. The chemotherapy regimen is rough.

Initially, LC1 felt energized about going home. Now, after the oncologist sauntered in and out of the room urging chemotherapy, LC1 became rapidly depressed. He could not shake it in the first few weeks after going home. What was notable about the oncologist’s comment was that he barely put it out there and then he left the room.
LC1’s insurance paid for a visiting nurse to come to the house. She taught him to walk again and changed his dressings.  He took some pain medication. When he could, he did what he could to learn about lung cancer chemotherapy.

No mental and emotional preparation seemed to be enough for their return visit to the first oncologist. He was dogmatic and warned LC1 and his family that if he chose not to have chemotherapy, he would be flirting with death. The visit was difficult.

A Second Opinion in the Same Town

A close friend urged them to get a second opinion. Initially they balked at the possibility of seeing anyone else. It felt like information overload and LC1 could not imagine how you juggle more possibly conflicting opinions.  With the help of a friend in the medical field, LC1 set up his appointment for a second opinion and also considered switching to the second oncologist at a different hospital than where he had his lung biopsy. With the appointment in hand, LC1 and his family began reading everything that they could find on the pros and cons of lung cancer chemotherapy. LC1’s brother joined a lung cancer support group on line and asked questions of people who had undergone lung cancer chemotherapy.

When LC1 went for his second opinion to a highly regarded lung cancer program, he was relieved that the second oncologist did not scream at him to have chemotherapy, or else face the consequences. He also took comfort in a fellow warmly urging the family to not just consult with them, but hopefully transfer all of LC1’s care to them.
In comparison with the first oncologist, the second one explained the pros and cons of the lung cancer chemotherapy regimen that he would choose for LC1. What was left outstanding at the end of the visit was the second oncology and pathology team’s review of LC1’s slides and medical clearance before starting chemotherapy.  But one comment took LC1 by surprise. Near the end of the visit, the oncologist asked: “What did the first guy say?” When LC1 told him that he recommended chemotherapy, the second doctor said emphatically: “Well I am going to say the same thing.”

LC1 wondered why it mattered what the first oncologist said, but he put that aside. LC1 admired the way that the oncologist spoke with him and thought that he probably would switch over to him. He began to request his slides so that the second group of pathologists could look them over. (This is frequently the case when a second group is evaluating you.)
A few weeks later, LC1 returned to the second oncologist. He had had good days and bad ones. He had read of people who felt that they got through the rough chemotherapy and days when he read about side effects that made him cringe.

The Search for a Follow-Up Oncologist Continues

His return visit to this oncologist took the wind out of his sails (as if the stitch in his side from the lung biopsy was not enough). To his surprise, the oncologist told him that because of several medical criteria, LC was unsuitable for treatment. Tumors like his did not respond well to the specific chemotherapy agents. Also, his personal biology made him more vulnerable to toxicity.  LC1 was also an unlikely candidate for any cancer clinical trials because his unique biology made him unsuitable.

What really flabbergasted him, though, was what followed. The oncologist told him flatly:“What this facility is about is really about treatment.” Since LC1 was not a candidate for treatment, the oncologist said: “Why not go back to the oncologist whom he saw first?”LC1 was dumbfounded. Can facilities or doctors just tell you to leave, that they won’t follow you? Is it all about chemotherapy fees, big business, or suitability for clinical trials? Was this ethical? How could this be acceptable?”

LC1 entered a dark period. He no longer had an oncologist and it was unacceptable to return to the first fear-mongering oncologist.  He and his wife did not know where they were. Some of LC1’s first impulses were to just screw it, look into alternative and complementary medicine. Mainstream American medical system in this large city had nothing to offer them. LC1’s friend asked a cancer expert in another state for recommendations. Somehow, something had to happen.

Fortunately, LC1 got a name from an out-of-state oncologist of an oncologist who was highly regarded. This American city has a huge number of oncologists. The system does not need to train more. A few weeks later, LC1 went to see oncologist number 3. For the first time in this saga, LC1 thought that he had finally stumbled upon an oncologist with whom he could work. The oncologist was fine following him and offering no chemotherapy. LC1 had his follow-up scans done at the new facility on the schedule that is widely used across the United States. Now in good hands, LC1 and his family relaxed.

Then, just before their second visit with the oncologist was set up, LC1 received a letter stating that his new oncologist was leaving to do research. LC1 could be followed by a new oncologist at the same facility that LC1’s oncologist highly recommended. So 9 months after his entire lung cancer saga began, LC1 was back to square one.  He went to the new oncologist and was pleased.

Of the four oncologists that he had seen so far, LC1 liked this one the best. He was down to earth, knowledgeable, and easy to talk with. He and his family relaxed again. Then the news came:  oncologist number-four did not take his insurance.

Exactly how many oncologists, if any at this large teaching hospital in a large American city, would accept his insurance and be willing to follow him, is currently unknown.

His insurance is one thing. LC1 considered himself fortunate that each year, he had the good fortune to review what his employer presented as a “cafeteria of health insurance options.” For years, his insurance met his needs when he was well. But he has entered new terrain. Furthermore, when he next reviews health insurance options, LC1 doesn’t know whether any other plan will have oncologists.

Recently, articles have shown how difficult it is for the poor, people on Medicaid, and the uninsured to find specialists.It is unconscionable, in my opinion, that people cannot get care. This story suggests that even so-called “good”insurance may offer little protection for sick people.

Do you think doctors and hospitals should have the right to pick their patients? Have you experienced anything like this?

Planning Orthopedic Surgery: Ask Ahead About Aftercare

Bookmark and Share

Don’t make the mistake of thinking that orthopedic surgery will miraculously dispense with your bone problems; aftercare is just the beginning of healing. That’s how two women see it. Each woman has had five or more orthopedic surgeries. They report that sometimes they felt abandoned, as if nobody was in charge, and their questions were not answered adequately, or on time. One woman, “Terry,” a wall artist and jeweler, had neck, shoulder, and hand surgeries in the mid-Atlantic; the other, “Gina,” had hip surgery at a few centers in California. Both women said that some of their surgeries went well and aftercare was not a big issue. But for other surgeries, it was hard to figure out who was in charge, and aftercare procedures seemed non-existent. By telling their stories, they hope, for the sake of other patients, orthopedic programs develop more systematic aftercare procedures.

Gina’s hip surgeries at teaching hospitals began when she was a child. She had many satisfactory surgeries, but one left her with intractable pain. “ I never should have been released when I had a pain score of 10 [the highest score]. They never managed my pain. They would just blame me and tell me about how none of the other kids that they treated had pain. I think, especially in pediatrics, they have to trust the patient.” Gina returned to the hospital as an outpatient for six months because of intractable pain. When it came time to have her final surgery after puberty, she refused to go back to that hospital, even though until that time, she and her family had built up a strong, personal relationship with the doctors and the staff. She and her family traveled to a neighboring, but much less convenient city, and they say that they will never go back to the place where her pain was a long-term nightmare.

“Unfortunately,” said Gina, “I think orthopedists think that once the surgery is done, they are all through, but for the patient, the recovery is only the beginning.” Gina also pointed to a lack of clarity about rehabilitation, including physical therapy and occupational therapy. Gina’s mother recently had a knee replacement and she had occupational therapy after surgery, and her recovery has gone extremely well. Even though she was far more comfortable after her last surgery, she said: “I still cannot bend down to tie my shoes. To this day, I wonder whether I should have been referred for PT or should have been told that this is the best that the surgery could do. Was it up to me to ask for physical therapy?”

Terry’s last surgery, to graft two bones together in her thumb, was by far, her worst, in terms of aftercare. Terry considers herself an easygoing person, but she regrets having gone to a big center where nothing gets relayed back to the doctor. I interviewed her when it was close to three months after her last hand surgery, the point at which she was supposed to be healed. “I think I am healing, but truthfully, I am not sure.” That’s because, whenever she had follow-up appointments, she knew that she had to have all her questions organized and not try to get something answered between appointments. “If I forget to ask a question at the appointment, I have to forget it.” After living through telephone menus, getting put on hold, and never knowing where she is being referred to when she calls from home with a simple question, she feels that she often hit a dead end or a dead-letter box.  “Sometimes they can’t find a hand surgeon or nobody wants to comment if that is not their specialty,” she said. Shouldn’t there be some person responsible for handling these things?”

Pain was hard to tolerate in her last surgery. Terry said that getting pain prescription before discharge was impossible. They told me: “We can’t give you anything because you are leaving tomorrow.” That left Terry with having to recruit her husband to go to the drug store to get her pain medication and a hole in time when her pain was not fully covered. During her three-month recovery period, “sometimes, I would call and they wouldn’t get around to ordering the pain pills until the next day.”

Terry does not feel that she has gotten timely feedback on restrictions in this last surgery either. “I have animals: big dogs and horses. It is not practical for me to have months on end where I cannot take care of them. I have tried to ask, is it going to do harm to walk the dog or get on the horse? People never call me back, or if they do, the answers don’t seem very helpful.”

Concerns that she felt were not addressed included getting someone to tell her whether pressure on her hand was as bad as lifting and how to deal with a lot of pain. Often, she found that, if she got someone to talk to her, their responses seemed more focused on their own liability rather than her needs. For example, she said: “When they tell me three months out to try and rest my hand, I want to say to them, how about patients who just don’t have restful lives?”

What Good Aftercare Might Look Like

Both women felt that relatively simple systems could be put into place that would not have left them with a sense of patient abandonment that put them into a funk. Gina suggested that just being able to send an email and know that your doctor was going to get back to you by the end of the day would be a big help. There also has to be a shift in medical training so orthopedists don’t just walk away and abandon patients after surgery.  Both women think that a written description of what to expect after surgery would be a major plus.

I contacted the American Academy of Orthopaedic Surgery  to reach an orthopedist for comment, but at press time, I had not heard back. Since this article was published, I learned that an  orthopedist will be getting back to me. A response will be published in the comments below.

Have you had a hard time recovering from orthopedic surgery? Was it difficult to reach people who could advise you about mobility, activity restrictions, or pain? Or did things go smoothly because you had your surgery at a place that had good aftercare practices in place. Let’s hear from you. Consider leaving a comment here.

 

How One Man Faced A Prostate Cancer Diagnosis

Bookmark and Share

The man I will call Paul remembers when he was first diagnosed with prostate cancer about a year ago. It started with a PSA of 4.3 ng/mL on a routine annual physical. A PSA of 4.0 ng/mL is a widely used cut-off point beyond which doctors send you off to a urologist to determine whether you have cancer. He was referred to a urologist where he had a digital rectal exam, a transrectal ultrasound and biopsy under local anesthesia. Paul remembers it was uncomfortable, with bowel urgency and some blood in the urine. He reminded himself, that in the future, for tests like these, he would request general anesthesia. “Once I had those symptoms, I thought this is a preview of what is going to come,” he said. By that, he meant the possibility of unpleasant side effects, such as impotence, urinary incontinence, and bowel problems that have been associated with treatments for prostate cancer.

When his urologist discussed the biopsy results, he told Paul that his Gleason score was  6 and that he had early-stage prostate cancer. Like many people who learn of a cancer diagnosis, Paul told me that once you are diagnosed, you enter a “world of cancer that you take with you until you die…At first, I told no one, but I found myself thinking about it every day. I knew that I had to learn more about it.” This is a story about Paul’s explorations to figure out what to do about treatment.

Paul is a 58-year-old Manhattan lawyer. He describes himself as a happily married man, with two children, and he wants to live to see his grandchildren grow up.  After listening to  his odyssey over the past year visiting a handful of doctors in New York City and a specialist out of state, Paul described himself as a “prostate cancer junkie.”

As a lawyer, Paul is accustomed to reviewing a lot of material. He knew that his prostate cancer was early, low-risk, and that he had some time to evaluate what to do next. Sitting with his first urologist as they reviewed his initial biopsy report, Paul told me that his “first impulse was: this is the ‘c’ word – get it out of here.” He had no preference for treatment.

When his first urologist told him the news, the urologist said: “I would not recommend that you consider active surveillance.” According to the National Cancer Institute, “active surveillance—in the past also called “watchful waiting” and “expectant management”—refers to a strategy of forgoing immediate treatment after a diagnosis of prostate cancer in favor of regularly scheduled testing and clinical exams to closely monitor the disease…If, at some point, there are indications that the disease is progressing—such as significant growth in the tumor or a rapid increase in PSA level or higher tumor grade on biopsy—definitive treatments such as surgery or radiation therapy can be pursued.”

Exploring Prostate Cancer Treatment Options

Paul began to explore the numerous treatment options available, the reputations of physicians and hospitals in New York, and began to weigh the information. During the last year, he read three prostate cancer books cover-to-cover that he picked up at Barnes and Noble, he downloaded peer-reviewed journal articles from the Internet, he changed his diet, and he went to the gym. He had two imaging studies: a CT scan and an MRI.

Reflecting on one of his first visits, where he was exploring  robotic prostatectomy, Paul recalled that the urologist was “not so experienced, but reassuring about side effects.” If he was going to pursue robotics, Paul wanted to see a doctor who was widely regarded as a top robotics doctor.

Paul could tell you the learning curve for doing a particular procedure well, as it was highlighted in the medical literature. In fact, Paul walked away from a doctor who he thought did too small a number of procedures. He understood the nuances in discussions about postoperative side effects. For example, in discussions of sexual potency, he knew that doctors often discuss it in terms of potency beforehand, surgical skill and experience, and that potency could be described as full potency, potent but only with Viagra, or whether you would need a pump. Paul didn’t take discussions about side effects lightly. “Sex is important to me,” he said. Even though some urologists and radiation oncologists claimed that they were better at preserving potency, he knew that there are no guarantees.

Most everyone spoke of what is called “definitive” treatment, having some surgical, radiation, or ablative treatment to eradicate the cancer. What was especially striking  was “that no one was objective, everyone was convinced that the procedure that they were selling was the best, resulted in the fewest side effects, and resulted in far fewer than their competitors,” he told me. Put another way, Paul said: “Nobody was procedure-neutral.”

Paul did not rule out any procedures. He looked for doctors and literature on radical prostatectomy (surgical removal of the prostate) , brachytherapy, radiation, intensity modulated radiation therapy (IMRT), and the cyberKnife radiosurgical system. He weighed active surveillance.  Paul hired a cousin who did medical research to look into the cyberKnife. And when he was taken with robotics as a possible way to minimize side effects, his cousin warned: “This is just a fad. I would not do robotics.” One doctor pushed him to have some extra assays done, saying that if they came out in a safe zone, he would follow him for active surveillance. Paul gave in, but later learned that the assays had not been validated.

Considering Active Surveillance

Paul looked to another doctor in New York who came highly recommended. That doctor agreed that if a confirmatory biopsy done at his institution put him in the same risk category as the first one, he too would follow him with active surveillance. He arranged to have another biopsy and went in for his results. But his hopes were dashed. The second biopsy revealed cancer in more cores than the previous one (9 of 16 cores, with as much as 30 percent cancer in some cores vs. 3/12 in the first biopsy) . Paul no longer satisfied that institution’s active surveillance protocol.  “He couldn’t tell me my cancer will or won’t progress, the point is it could progress, and it is more likely to progress than cancer that comes within their active surveillance criteria.” More than any other doctor who he had seen –and he saw about five specialists—he trusted this doctor and described him as the “most unpushy, the least biased.” When they discussed treatment approaches, the doctor told him that he was currently doing mostly robotic prostatectomies, reserving open procedures for more complicated cases. Paul left the office to review his options.

His last step was visiting a urologist out of state who authored several journal articles about active surveillance. Paul wanted to know his viewpoint on whether active surveillance was safe for him. Active surveillance is not widely endorsed in the United States, but articles in top-tier journals are raising concerns about PSA screening resulting in an epidemic of overdiagnosis  of prostate cancer and overuse of definitive treatment, (for example Thompson and Klotz, 2010; Albertsen, 2009; Klotz, Zhang, Lam, Nam et al., 2009). The American Cancer Society recommends discussing PSA screening rather than doing it automatically; it also recommends discussing treatment options, including active surveillance, so individuals can weigh their risk tolerance and make an informed decision. The Foundation for Informed Medical Decision Making has been at this a long time, and promotes open discussions with patients about PSA screening and prostate cancer decision-making and striving to understand the patient’s voice.

Paul wanted to hear whether this last doctor was comfortable with him trying active surveillance. Paul could have the PSAs in New York and visit occasionally for follow-ups. Clear endpoints for going off active surveillance would be set. The doctor emphasized that the natural history of low-grade prostate cancer is not understood well enough to make clear predictions. Paul decided that he would give active surveillance a try. “He warned me, though, that many patients cannot hack it because of anxiety,” said Paul. “I was told that within two years, 25 percent or more patients drop out, and get definitive treatment.”

Paul began active surveillance. In fact, in the first week and a half, he said he was racked with insomnia. That too, passed, and he is feeling comfortable that he will be able to do active surveillance.  One observation that Paul made struck me: he feels that he needs to overcome this sense that he is doing nothing. He feels an urgency to take action. Paul went for a consultation for good nutrition for prostate health. He bought supplements from a urologist in Manhattan, but stopped them when he got diarrhea. Paul drinks pomegranate juice, takes extra lycopene (a tomato-based antioxidant),  and he pays close attention to new findings on nutrition and prostate procedures. He goes to the gym regularly.
In the year following his 4.3 PSA, that PSA has never been replicated. His PSA has consistently been around 2  or under. For now, he is pursuing active surveillance. Paul keeps reading and is tempted to visit doctors for their opinions. He thinks that he is safe right now, but he is open to hearing the arguments of physicians that he trusts. “I wouldn’t do it if I didn’t think it was safe. I want to live to see my children’s grandchildren.”