Letters From Cancerland: Comprehensive Cancer Care
A hot topic in my coffee klatch is comprehensive cancer care. Mark, our ringleader and the healthiest of the bunch, constantly brings our conversation round to that concept.
(For the record, there are four of us in the klatch, three of whom have cancer, and the fourth of whom has some mysterious debilitating chronic illness, or combination of illnesses, that has stumped several major medical institutions.)
Mark’s passion is connecting the dots between oncology and comprehensive care. So he often poses a series of questions when we meet.
Which of us, when we were diagnosed, were given nutritional information or directed to a nutritionist by our oncologist?
Which of us, when we were diagnosed, were given an exercise regimen or directed to a physical therapist or trainer, by our oncologist?
Which of us were directed to a counselor or other psychosocial services by our oncologist? Were any of us connected to a mentor or guide with the same kind of cancer?
If any of us were treated in the past, or are treated in the present, at a certified comprehensive cancer center, Mark allows us to substitute “treatment center” for “oncologist.”
Our responses are all some variation of “not I.”
The Commission on Cancer (CoC), a program of the American College of Surgeons, certifies facilities that provide “comprehensive, high-quality, and multidisciplinary patient centered care.” The certification process requires, among other things, “improving survival and quality of life for cancer patients through ... comprehensive quality care.” If you were to look at the CoC’s 2016 standards for certification, you will see benchmarks for nutrition, rehabilitation, and psychosocial services, among others.
The takeaway from what our small number (certainly not a valid statistical set) has experienced so far is that, while a cancer facility must establish such a wraparound program to be certified, the program itself need not be very accessible to the patient – or, for that matter, even viable in terms of patients served and the strength of the program.
Mark and another member of our klatch are treated at a large cancer center in our area, and both agree that while the comprehensive program exists on paper, it has not in seven years ever really gotten off the ground in reality. (Mark is involved in establishing a stand-alone comprehensive survivorship program, and so has plumbed the depths of the aforementioned institution as part of his work, in addition to being treated there for the last three years. So he’s not just speculating as to the quality and viability of the program.)
We talked a long time at our most recent klatch about who or what should have the responsibility – moral or ethical – to steer a cancer patient right out of the gate towards comprehensive care. The oncologist? The cancer facility or hospital? Someone or something else?
I suggested the entity that stood to gain the most and should demand comprehensive care is the insurance industry. Studies show that patients who eat well, exercise, and have psychosocial services (defined broadly) have better quality of life and sometimes better outcomes than those who don’t. If I am an insurance company that has just shelled out a lot of money on cancer treatment, I have a vested financial interest in demanding not only that the insured take all possible steps to achieve a more healthful state, but also that the medical providers I am reimbursing make readily available a wide range of real (not promised) services from the diagnosis forward.
As a group, our klatch was pretty negative on what we see as the silo approach to cancer treatment. You know: the oncologist is in his or her silo, the nutritionist is in his or her silo, the psychosocial services are way over there in that silo, and who asked the physical therapists to the silo?
We all agreed that regardless of which group spearheaded any move to change this, a commitment to true comprehensive care would change the face of cancer treatment in this country. (I specify the United States because it's my understanding that many European nations have already made this leap. I cannot speak for Canada, but I bet some of the readers can.) We would all be the better for at least having the opportunity of getting wraparound services and support to improve our quality of life. Whether we the patients follow through is a topic for another column.
My experience?
My personal physician talked to me about nutrition way back when, my oncologist has for 12 years occasionally asked me about exercise, and no one has suggested any psychosocial services of any kind. (As to that last category, apparently I am just amazing and therefore immune to depression or other mood swings.) What survivorship anything I have garnered over the years has been the result of my own research or from reading columnists and readers’ contributions to The Myeloma Beacon.
I don’t know if reading The Beacon qualifies as psychosocial services, but, hey, it works for me.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
I think that my experience is similar to most. Nobody talked to me about nutrition, exercise, or psychological care. The only nutritional information was what not to eat that might interact with the medications. I brought up exercise in the context of my bike riding desire. Psychological services were not offered or even discussed.
I believe this type of comprehensive care should start with the oncologist. They are the focal point. They then can coordinate with the primary care physician who may be the best person to oversee the non oncology issues. Someone has to be the team coordinator and break through the silo approach.
Thanks April for the thought provoking column! In answer to your questions about cancer care as a comprehensive experience, I think I can say that at my cancer centre they strive to help people with that. Every single time I have an appointment with the hematological oncologist, radiation oncologist, or medical oncologist, I fill out the same questionnaire. Basically the questions are about my well-being. If I were to answer on a scale of 1 to 10 that I am having problems with any number of ailments (depression, sleeplessness, pain, or others that I can write about), the oncology nurse will speak to me about those issues. I know that there are psychologists on staff. The daughter of one of my friends got a job there as a psychologist! Also, when I was having the stem cell transplant, an interdenominational pastor visited me to see if I wanted any help, and a physiotherapist led me through some exercises with a thera band for strength and stretching.
So I think that we are fairly well served here, although of course I am sure there is always room for improvement!
Thank you for this column. How great that you get together with a regular group. Here's a long reply with my experience with comprehensive care.
My experience in the areas you mentioned is fairly good. When I was diagnosed with multiple myeloma 8 years ago, I received an info packet with summaries of resources at the hospital, and helpful tips. I didn't use the resources, because my disease was so advanced that I immediately went into a clinical trial (successful for me) and had no energy for anything but treatment and rest. My oncologist does regularly ask what exercise I get, and encourages it.
My oncologist is hospital-based; there are flyers in the elevators about meetings at the hospital and related services and sometimes events that are not hospital-based. In the infusion center, the oncology nurses were wonderful at taking time to talk. Very occasionally, a complementary-approach person – I remember an art therapist with a cart of art supplies, and a humorist who, with my agreement to let him do so, chatted and told some jokes.
Four years ago when my multiple myeloma returned, I received 4 months of chemo and then the prep / process at another center for a stem cell transplant. At that center, a psychosocial evaluation was part of the day of testing to determine whether or not I would be okayed for the transplant. I was offered a wide array of possible complementary approaches, at no extra charge. I don't know whether or not they were grant-funded. Many, like massage, involved touch, so I declined those. I was offered counseling, and said that I would definitely ask for that if I needed it after the transplant, or if nurses/doctors/family thought I did. In advance, I did sign up for guided meditation. A wonderful woman visited me in my isolation room a few times.
Overall, both centers did well in comprehensiveness, I felt. In 1999, 10 years before my multiple myeloma, I also experienced other cancer care, mostly at the center where I'm followed for my myeloma, when I was treated for thyroid cancer. There weren't the kinds of comprehensive service that you recommend, Support services for thyroid cancer patients were just beginning to at that time, mainly through a survivorship nonprofit and focusing on the unique aspects of that cancer. I still volunteer for it. The support and education I received, and educational events where I interacted with a lot of specialist physicians, helped me greatly in my experience with multiple myeloma. Especially in communicating with the many different specialist physicians and other health professionals who have been involved in my multiple myeloma care.
I'm glad to hear about the efforts toward comprehensive care, and wish you and your friend well in these efforts.
My own experience with multiple myeloma follows what others have said here. Nutrition and exercise were not emphasized by my oncologist, though I got visiting physical therapy after my hip replacement, and by my request after stem cell transplant. So I got a series of exercises and a framework of increasing exercise to follow, which has been very helpful.
Thanks, April, for highlighting what is often missing in our cancer treatment.
I believe where I'm treated, their services continue to improve over the last 5 years. We have thriving complementary services, a cancer walk and talk group, art therapy, and physical therapy. What I note missing is coordination. Many of the services are patient referred and often are identified in the cancer walk and talk group. One of the strengths of the program are nurse navigators who do help patients get the services we need. So I give our program a B plus with more coordination needed among services.
Maureen
Hello my friend! I was helping a fellow nurse answer a multiple myeloma question and the Beacon popped up! So I nonchalantly scrolled down and behold, I see your beautiful face!!
I hope you are well, as well as you can be. I am delighted to see you contributing to the patient experience. There is no voice like the one who has "walked in those shoes".
I wish you well and hope our paths cross again soon!
Michelle
Oncology RN
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