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Navigating Cancer Post-Treatment: Who Will Help You?

It is completely understandable if you associate the term “cancer survivor” with an image of glamorous, defiant Gloria Gaynor claiming that She. Will. Survive. Or maybe with a courageous Lance Armstrong in his quest to reclaim the Tour de France.  Or perhaps it is linked for you with heroic rhetoric and pink-related racing, walking and shopping.

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I never call myself a survivor because when I hear this term, I recall my experience following each of four cancer-related diagnoses. It has not been triumphant. It’s been terrifying and grueling.  It hasn’t taken courage to get through the treatment.  It’s taken doing the best I can. I am not still here because I am defiant.  I am here because I am lucky, because I am cared for by good clinicians who treated my cancers based on the best available evidence, and because on the whole, I participated actively in my care. But mostly I am here because each successive diagnosis was made as a result of being followed closely with regular checks and screenings and because my doctors responded effectively to questionable findings and odd symptoms.

There are 12 million Americans living today who have been treated for cancer. Not only are we at risk for recurrences but, as Dr. Julia Rowland, director of the Office of Cancer Survivorship at the National Cancer Institute, notes, “Research shows that there are no benign therapies.  All treatment is potentially toxic and some therapy may itself be carcinogenic. Today, people are living long enough to manifest the health consequences of efforts to cure or control their cancer.”

Who amongst our clinicians is responsible for helping us watch out for those consequences for the balance of our lives?

Good question.

Recent survey research published in the Journal of General Internal Medicine asked primary care clinicians and oncologists who should monitor and care for cancer patients once they finish active treatment. Almost two-thirds of oncologists had little confidence in the skills of primary care clinicians to order appropriate tests and care for the late effects of breast cancer treatment.  And many primary care clinicians agreed, only 40 percent of primary care clinicians expressed confidence in their own knowledge about testing for recurrence and late effects.

But the demand for oncologists to treat active cancer is already high, and the number of people who have been treated for cancer is growing. Many oncologists are unwilling or unable to assume full responsibility for active, ongoing monitoring of all their patients in perpetuity. However, their lack of confidence in their generalist colleagues’ ability to provide survivorship care makes smooth handoffs after treatment problematic. In addition, in the survey cited above, although oncologists said that they provided treatment  summaries or care plans to primary care clinicians a majority of the time, primary care clinicians reported receiving  them a minority of the time.  Further, while oncologists reported communicating frequently with other physicians to clarify their respective roles in follow-up care for cancer survivors, primary care clinicians’ perceptions were that this communication occurred infrequently.

And so who is it, again, who will take responsibility for our survivorship care? And how is such care to be coordinated?

It’s true that caring for us requires specialized knowledge. Since 1996, the Office of Cancer Survivorship at the National Cancer Institute has funded research on the phenomenology of cancer treatment: the outcomes and prevalence of persistent fatigue, pain syndromes, sexual dysfunction, memory problems and late effects – cardiac problems, second malignancies, stroke, and obesity – that are associated with cancer and its treatment.

Findings from these studies are a driving force for the need for treatment summaries and care plans that address our ongoing challenges.  The Office of Cancer Survivorship has worked in collaboration with many others to push every possible lever – from supporting Institute of Medicine and President’s Cancer Panel reports focusing on this issue, to encouraging adoption of survivorship care planning as part of the quality care standards developed by the American Society of Clinical Oncology, the National Coalition of Cancer Survivorship, the American Cancer Society and the American College of Surgeon’s Commission on Cancer– to ensure that treatment summaries and follow-up care recommendations are used as the basis of a “survivorship plan” for each patient.  The American College of Physicians has developed guidance to smooth the relationship between generalists and specialists through a collaborative “handshake” in the Patient-Centered Medical Home model.

So the stage is set, the ground is laid, it should be possible for oncologists to triage the less complicated among us to primary care providers, to share the care of some of us and to maintain full responsibility for survivorship care for those of us with multiple cancers and related conditions.

What’s standing in the way of this solution?

I asked Paul Wallace, an oncologist formerly with Kaiser Permanente (now with the Lewin Group) to speculate about some of the barriers.  He talked about how:

…Cultural factors play a role…the growing reliance over decades for patients to rely on specialists to solve the tough problems…for oncologists, cancer survivorship is a victory and they need to regularly see success in order to maintain their motivation and balance.

…The practical barriers are considerable: the compartmentalization of practices, especially medical records, are exacerbated by the complexity and language of cancer treatment…the time required to summarize a patient’s treatment and its implications in a form that would be useful for a generalist with no reimbursement for doing so.

And the incentives for oncologists to retain patients in fee-for-service settings, especially with the threat of cuts to reimbursement on top of escalating expenses.

These are very real barriers.  And there are individuals and organizations – oncologists, generalists and patient advocates – who are deeply committed to overcoming them. Nevertheless, I am concerned that cancer survivorship planning and care will be eclipsed by the flux in health care delivery, the ambivalence of oncologists and primary care providers about taking on (and taking seriously) caring for cancer survivors, and the growing economic pressures on patients and our families.

Those of us who have been treated for cancer need to hear from our physicians – primary care and oncologists alike – that survivorship care is as important to us now as treatment was before, and that they will help us to strategize about how to live long and well with the risks and effects of our disease.  And then we need them to stick with us and with those strategies, modifying them as our health changes and new findings emerge.  We cannot – and most of us will not – do this without the leadership of our clinicians.

And without that leadership, being a “cancer survivor” will remain as aspirational and as insubstantial as the images of pink-garbed happy walkers, a sleek biker and the hopeful words of a glamorous R & B singer.

*This blog post was originally published at Prepared Patient Forum: What It Takes Blog*


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Richmond, VA – In an effort to simplify inpatient medical billing, one area hospitalist group has determined that “altered mental status” (ICD-9 780.97) is the most efficient code for use in any patient work up.

“When you enter a hospital, you’re bound to have some kind of mental status change,” said Dr. Fishbinder, co-partner of Area Hospitalists, PLLC. “Whether it’s confusion about where your room is located in relationship to the visitor’s parking structure, frustration with being woken up every hour or two to check your vital signs, or just plain old fatigue from being sick, you are not thinking as clearly as before you were admitted. And that’s all the justification we need to order anything from drug and toxin screens, to blood cultures, brain MRIs, tagged red blood cell nuclear scans, or cardiac Holter monitoring. There really is no limit to what we can pursue with our tests.”

Common causes of mental status changes in the elderly include medicine-induced cognitive side effects, disorientation due to disruption in daily routines, age-related memory impairment, and urinary tract infections.

“The urinalysis is not a very exciting medical test,” stated Dr. Fishbinder. “It doesn’t matter that it’s cheap, fast, and most likely to provide an explanation for strange behavior in hospitalized patients. It’s really not as elegant as the testing involved in a chronic anemia or metabolic encephalopathy work up. I keep it in my back pocket in case all other tests are negative, including brain MRIs and PET scans.”

Nursing staff at Richmond Medical Hospital report that efforts to inform hospitalists about foul smelling urine have generally fallen on deaf ears. “I have tried to tell the hospitalists about cloudy or bloody urine that I see in patients who are undergoing extensive work ups for mental status changes,” reports nurse Sandy Anderson. “But they insist that ‘all urine smells bad’ and it’s really more of a red herring.”

Another nurse reports that delay in diagnosing urinary tract infections (while patients are scheduled for brain MRIs, nuclear scans, and biopsies) can lead to worsening symptoms which accelerate and expand testing. “Some of my patients are transferred to the ICU during the altered mental status work up,” states nurse Anita Misra. “The doctors seem to be very excited about the additional technology available to them in the intensive care setting. Between the central line placement, arterial blood gasses, and vast array of IV fluid and medication options, urosepsis is really an excellent entré into a whole new level of care.”

“As far as medicine-induced mental status changes are concerned,” added Dr. Fishbinder, “We’ve never seen a single case in the past 10 years. Today’s patients are incredibly resilient and can tolerate mixes of opioids, anti-depressants, anti-histamines, and benzodiazepines without any difficulty. We know this because most patients have been prescribed these cocktails and have been taking them for years.”

Patient family members have expressed gratitude for Dr. Fishbinder’s diagnostic process, and report that they are very pleased that he is doing everything in his power to “get to the bottom” of why their loved one isn’t as sharp as they used to be.

“I thought my mom was acting strange ever since she started taking stronger pain medicine for her arthritis,” says Nelly Hurtong, the daughter of one of Dr. Fishbinder’s inpatients. “But now I see that there are deeper reasons for her ‘altered mental status’ thanks to the brain MRI that showed some mild generalized atrophy.”

Hospital administrators praise Dr. Fishbinder as one of their top physicians. “He will do whatever it takes to figure out the true cause of patients’ cognitive impairments.” Says CEO, Daniel Griffiths. “And not only is that good medicine, it is great for our Press Ganey scores and our bottom line.”

As for the nursing staff, Griffiths offered a less glowing review. “It’s unfortunate that our nurses seem preoccupied with urine testing and medication reconciliation. I think it might be time for us to mandate further training to help them appreciate more of the medical nuances inherent in quality patient care.”

Dr. Fishbinder is in the process of creating a half-day seminar on ‘altered mental status in the inpatient setting,’ offering CME credits to physicians who enroll. Richmond Medical Hospital intends to sponsor Dr. Fishbinder’s course, and franchise it to other hospitals in the state, and ultimately nationally.

***

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