Archive for the ‘Improving the Patient Experience’ Category
Friday, February 24th, 2012
I’m not really an expert in astronomy, but sometimes cancer treatment seems like a black hole. When you head into it, you have no idea what will happen. During it, you never know if you will ever be able to live normally, all you are able to do is just try to survive. When you come out of it, you wonder what happened to those two and a half years of your life. It blurs the years together in this clump, as if those years didn’t exist.
According to US News and World Report, “The gravitational pull of the largest black holes is equal to that of more than 3 million of our Suns—not even nearly mass-less light can escape it. According to Einstein’s theory of general relativity, the force is so great, that whatever falls into a black hole is crushed beyond its very essence into a state that “crosses over” the boundary between something and nothing, never to be seen again.” Cancer treatment definitely seems to do just that, crushing a person beyond his or her very essence and pulling into it months or years of that person’s life.
Lots of scientists say that there is no way to escape a black hole. It has too much force they say. Sometimes I question whether patients can ever escape their treatment after they completed it because its physical and psychological effects seem to stick around long after it has finished.
Even though I am done my treatment and am half way through my twelfth grade year, I find myself struggling with several different things. I feel like I should be half way through college already, making an independent life for myself, at a maturity level far beyond that of my friends. At the same time, I feel like I’m only in tenth grade, still struggling to fit in with friends, and having a hard time knowing how to act around guys. I feel like I know so much more about life than my friends, yet they know so much more about the life of a high school student than me. I feel like I’m more than ten years older than my friends sometimes, yet I just recently got my license and I haven’t had boyfriends or gone to parties like they have. It’s a strange combination and I don’t exactly know what to do about it.
There is one researcher at the University of Pennsylvania who has figured out a way that information can survive a black hole and it involves a whole lot of complicated stuff. I don’t know those details, but I think the idea is same with cancer treatment. Some people think you can’t survive it, but really you can. You just have to think about how to go about it. Luckily, surviving cancer doesn’t involve the crazy rocket science that real black holes require. Surviving cancer treatment simply involves sticking to the mentality of the scientist who found a way for information to survive a black hole: find a way to survive.
I am still climbing out of the black hole it seems, but what pushes me further and further out is all of the work I have done to help other children and teens with cancer. Speaking about my story as a Johns Hopkins Patient Ambassador gave me confidence, writing this blog gives me purpose, helping to run a teen cancer support group makes me happy, and becoming a counselor in training at Camp Sunrise (Johns Hopkins cancer camp) allows me to lose all of my inhibitions for one week every year. Whether you feel you need to get closer to cancer or farther away from it is your choice, but you may find that doing something to help others, and not necessarily others with cancer, makes you feel better about yourself and your life.
Don’t let the gravitational pull from the black hole of cancer treatment crush your very essence.
Yours in Oncology Excellence,
Clarissa Schilstra
Guest Blogger and Two-Time Leukemia Survivor
If you have any questions, contact primeASCENT by calling 410-444-6024 or click here today!
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Tags: Camp Sunrise, cancer treatment, children and teens with cancer, Einstein's theory of general relativity, Johns Hopkins cancer camp, Johns Hopkins Patient Ambassador, Leukemia Survivor, Oncology, physical and psychological effects, PrimeASCENT, Surviving cancer treatment, The Black Hole, University of Pennsylvania
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Tuesday, October 18th, 2011
Getting a patient to hydrate himself/herself prior to arrival at clinic can save both time and money.
My daughter had countless outpatient visits for chemotherapy during her three-year leukemia treatment. Each time my teenage daughter went to the clinic for an outpatient chemotherapy appointment, her nurse told her to make sure she drank at least two bottles of water before she arrived so she would be hydrated enough to begin treatment right away. As a result, my daughter was very good at drinking two 8-ounce water bottles as we drove to the clinic. By the time we got to the clinic and her nurse took her blood, my daughter’s hydration level always met the criteria to begin chemo right away. We never had to wait for the nurse to give her IV fluids in order to start chemotherapy. My daughter’s nurse often commented on how many hours we saved because we did not have to wait for the fluid IV drip to complete, to hydrate her sufficiently, before we began her chemo hit. She noted that some patients needed up to four hours of IV fluids before their levels were high enough to begin treatment.
I used to think about all the poor parents who did not have such a conscientious child. I used to think about the number of hours they had to sit in clinic, all because their child would not drink two bottles of water before arriving to clinic.
The younger the child, the harder it is to help them understand why drinking water is important, and why drinking up to two bottles of water is required before treatment can begin. I am sure it can be difficult to help people of any age, young and old alike, understand why hydration is an integral part of their treatment process.
What if a cancer center handed out a special water bottle that represented the amount of water the patient needed to drink to be properly hydrated? Could the clinic or parent give a prize to the child if they drank it all before arriving at clinic? What other strategies could a clinic use to get a patient to hydrate his or herself prior to arriving at clinic?
How effective is your cancer center at educating patients on the importance of hydration? How many hours does your staff spend hydrating patients, something they can really do by themselves before they even get to clinic?
Please call primeASCENT today to help you evaluate the way your clinic views hydration and treatment preparation. Let us help you increase the speed and reduce the cost of patient treatment.
Yours in Oncology Excellence,
Christina Schilstra
Guest Blogger
If you have any questions, contact primeASCENT by calling 410-444-6024 or click here today!
Check us out on Facebook, LinkedIn and Twitter as well!
Tags: cancer center, chemo, chemo hit, chemotherapy, Christina Schilstra, Clinic, educating patients, fluid IV drip, Getting a patient to hydrate, hydrating patients, hydration level, increase the speed and reduce the cost of patient treatment, IV fluids, leukemia treatment, Nurse, Oncology, outpatient chemotherapy appointment, outpatient visits, PrimeASCENT, properly hydrated, special water bottle, treatment preparation, Water Works
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Wednesday, September 21st, 2011
Everyone knows that chemo makes people feel nauseated and often leads to the terrible side-effect of vomiting. Fortunately, many drugs have been developed to help significantly reduce nausea during cancer treatment. We learned first-hand that palliative care can result in substantially reduced inpatient stays – a positive side-effect of this chemo side-effect.
When my daughter had leukemia the first time, she was only two and a half years old. Zofran and Benedryl were sufficient to help her through her bouts of nausea. When my daughter relapsed, at thirteen years old, the chemo cocktails were increased substantially. She also received chemo and steroids in her spinal column because of her CNS3 relapse in her spine. Her nausea and vomiting were intense. She lost twenty-five pounds during the first month of her treatment using only Zofran and Benedryl.
We then learned about Emend, a newer anti-nausea medicine that was FDA approved only for adults. Because my daughter was adult-sized, the doctors agreed to try it. During Induction 2, she had to endure four high-dose methotrexate treatments, one a week for four weeks. During our first inpatient stay, she was given Zofran and Benedryl to combat nausea. It was a hellish, five-day inpatient stay before her levels cleared enough to go home. Almost a whole week! For the remaining three high-dose methotrexate treatments, we used Emend, in addition to Zofran and Benedryl. The difference was miraculous. Because of Emend, she could eat during the chemo drip – unheard of in the previous high-dose treatment. Eating the food helped her clear the methotrexate so much faster. Using Emend literally cut our inpatient stay in half, from five days to two and a half days. As an added bonus, she could sit up and talk and watch TV throughout the treatment; she no longer curled up in the fetal position for days at a time.
I understand the risk I took to administer Emend to my child as a non-FDA-approved drug, but the benefits were unbelievable. First, the cost of the inpatient stay was cut almost in half. Second, we now had two and a half days more to be together at home as a family, instead of being split apart by the hospital visit. Third, and some would argue most important, the treatment was MUCH easier for my daughter. Throughout the remaining two and half year treatment, I used to wonder if her success would be compromised because the methotrexate passed through more quickly than the protocol was designed for – would it be too quickly? But she survived the protocol, so it turned out to be a good decision.
This demonstrates that palliative care not only increases the comfort level of patients but that it can reduce the length of stay during a hospital or clinic visit.
How integrated is palliative care in your cancer program? How much do you emphasize improvements in palliative care to improve the patient’s experience?
Please call primeASCENT today to help you use palliative care to improve the efficiency of your cancer center as well as the patient’s experience.
Yours in Oncology Excellence,
Christina Schilstra
Guest Blogger
If you have any questions, contact primeASCENT by calling 410-444-6024 or click here today!
Check us out on Facebook, LinkedIn and Twitter as well!
Tags: anti-nausea, anti-nausea medicine, Benedryl, Cancer, cancer center, Cancer program, cancer treatment, chemo, chemo cocktails, chemo drip, chemo side-effect, clinic visit, drugs, Emend, FDA approved, feel nauseated, high-dose treatment, Hospital, improvements in palliative care, Induction 2, inpatient, Leukemia, Medicine, methotrexate treatments, non-FDA-approved drug, palliative care, Patient's Experience, positive side-effect, reduce nausea, reduced inpatient stay, relapse, relapsed, Side Effect, side-effect of vomiting, steroids, The Side Effect of the Side Effect!, Treatment, vomiting, Zofran
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Thursday, August 25th, 2011
When my daughter was treated for her leukemia relapse, she received a discharge summary after every outpatient visit and inpatient stay. This is very good medical practice at a cancer center. Throughout treatment, many things change. A patient’s illnesses may change. A patient’s protocol may change. A patient’s weight may change, sometimes substantially. All this change can lead to changes in drugs and doses administered, and the delivery of the drug to the patient during the following days and weeks. Additionally, if there is a mistake in the dosage, a review of the medicine at discharge can act as a final review of that medicine to ensure that its is taken correctly at home. Discharge summaries can help eliminate four types of medicine issues: unnecessary medicines, medicine changes, incorrect dosage and delivery mistakes.
For example, I spoke with the mother of a teen cancer patient and asked her what medicines her daughter was taking. She listed them all, including Claritin. I asked why the teen was taking Claritin. She was not sure. Was this prescribed for an allergy that the teen had experienced during the spring? Now that it was late summer, was that really still necessary? Why should the teen take this extra drug if it is no longer necessary? I suggested she check with her oncologist to review the need for this drug.
The second example is about changes in drugs to be taken. During cancer treatment, complications (e.g. neutropenia, infections, allergic reactions) may occur, or the cancer may no longer respond to a particular drug. A patient’s protocol may also change. These situations may trigger a reduction in dose, the use of the drug may need to be stopped, either temporarily or permanently, or new drugs may be introduced. After a while, a drug regimen may resume at the initial strength. All this represents numerous medicine changes and it is critical during this time that all members of the clinical team are well informed about any of these changes. Ensuring these changes are documented on the patient’s discharge summary enables the staff to carefully check that these changes are accurate and to review these changes with the patient.
The third example is about dosage mistakes. When my daughter was first admitted and put on the appropriate leukemia relapse protocol, we spent several weeks in the hospital. Upon her discharge, a nurse reviewed her discharge summary and noted that the Bactrim dosage was too low, half of what it should have been. This was corrected. My daughter remained on the correct dose for the remainder of the two and a half year protocol. The discharge summary offers a cancer center one more opportunity to check for accuracy before a patient goes home and fills all of his/her prescriptions.
The fourth, and final, example is about delivery mistakes. When my daughter had leukemia the first time, she was prescribed 6-Mercaptopurine. While an inpatient, the nurses gave it to her at dinner. When we got home, we gave it to her every night, right after dinner. After six months of treatment, a short discussion with the pharmacist revealed the need to give this drug on an empty stomach, preferably right before bedtime. This delivery mistake was not corrected during the first six months of her original protocol because a discharge summary was never given to us, listing this drug and the need to take this drug on an empty stomach.
What do you post on your discharge notices? Do you include drug AND dose AND delivery instructions? Do you include these items on both your inpatient and outpatient discharge summaries?
Be sure your discharge process does not lead to unnecessary setbacks in your patients’ progress. For a complete review of your discharge processes, please call primeASCENT today!
Yours in Oncology Excellence,
Christina Schilstra
Guest Blogger
If you have any questions, contact primeASCENT by calling 410-444-6024 or click here today!
Check us out on Facebook, LinkedIn and Twitter as well!
Tags: allergic reactions, allergy, Cancer, cancer center, Cancer patient, cancer treatment, Claritin, Complications, delivery mistakes, Discharge Summaries, Discharge Summaries: A Critical Tool For Reducing Medication Errors, discharge summary, dosage mistakes, doses, drug, drug regimen, drugs, Hospital, illness, incorrect dosage, infections, inpatient, Leukemia, leukemia relapse, medical practice, Medication, medication errors, Medicine, medicine changes, medicine issues, medicines, neutropenia, oncologist, outpatient, patient, pharmacist, prescribed, PrimeASCENT, Reducing Medication Errors, Treatment, unnecessary medicines
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Friday, August 5th, 2011
A cancer diagnosis rocks a patient’s world. One feels like one is thrown into a long dark tunnel and told to move forward. The future feels very uncertain. When my daughter was diagnosed with cancer the first time, the oncologist spent two hours with my husband and I reviewing the numerous drugs that my daughter would be given. He then handed us a summarized, five-page outline of her protocol, which listed when each drug would be administered to her. He called it her “roadmap”. This was our guide through the dark tunnel of cancer treatment, a 7 ½ year road we would follow through shots, pills, IVs and blood tests. This roadmap was like our lifeline because it defined our “road”, gave us direction and defined the duration of the leukemia treatment protocol. But we quickly learned that the road was not necessarily straight. We learned about the forks in the road, I call them Tangents. It is critically important that doctors become aware of these forks in the road and put procedures in place to recognize and address such Tangents from the original cancer treatment roadmap.
For example, during my daughter’s leukemia relapse treatment, she developed a spinal headache from her spinal tap. She lay for weeks, on her back, as the doctors worked through the standard protocol (roadmap) to get her into remission. Having put chemo in her spine during the spinal tap, it became clear that the spinal tap would not resolve itself (as they usually do). A multi-disciplinary approach was necessary. The doctors recognized the fork in the roadmap, the Tangent, and worked with the Pain Management Department in the hospital to give her an Epidural Blood Patch. Almost immediately, her head pain diminished and she was able to stay on track – on her roadmap.
Following the successful resolution of her spinal headache, the doctors found a blood clot in her Iliac Vein. The blood clot formed while she was lying still for so many weeks. Once again, we found ourselves on another fork in the road. We began the Deep Vein Thrombosis therapy, while simultaneously doing the leukemia protocol. With an ANC close to zero and a seriously reduced clotting factor in her blood, it became a balancing act to transfuse enough platelets to bring the clotting factor in her blood up high enough to give her the shots of Lovenox. In the end, the clot resolved and the extra platelets and medicines (Lovenox) were no longer necessary. We found ourselves back on the standard roadmap, actually happy to be following the normal course of treatment.
After talking with numerous other parents of children with cancer, I realized that it is rather common for Tangents to occur during a cancer treatment protocol (roadmap). We met patients who were experiencing severe chemo burns, secondary infections like RSV which made it difficult to breathe, relentless nausea resulting in dangerous weight loss, and many others.
The question is:
Are you prepared for the Tangents?
Whether it is a Tangent that can be addressed within the oncology department, like an anaphylactic reaction to a drug, or a Tangent that is more complex, like a chemo burn requiring burn unit support, how does your cancer center identify and address Tangents? What procedures are in place to provide solutions that require treatment support outside the oncology department? What steps do you take to identify Tangents, proactively address them, and thereby, maximize the ability for your patients to stay on their roadmaps?
Call primeASCENT today to help you identify and proactively address the Tangents that occur during cancer treatment in your cancer center.
Yours in Oncology Excellence,
Christina Schilstra
Guest Blogger
If you have any questions, contact primeASCENT by calling 410-444-6024 or click here today!
Check us out on Facebook, LinkedIn and Twitter as well!
Tags: anaphylactic reaction, blood clot, blood tests, burn unit, Cancer, cancer center, cancer diagnosis, cancer treatment, cancer treatment roadmap, chemo, chemo burns, children with cancer, Deep Vein Thrombosis, Deep Vein Thrombosis therapy, diagnosed, diagnosed with cancer, diagnosis, difficult to breathe, Doctors, drug, DVT, Epidural, Epidural Blood Patch, forks in the road, head pain, Iliac Vein, Leukemia, leukemia protocol, leukemia relapse treatment, leukemia treatment, Management, medicines, multi-disciplinary approach, nausea, oncologist, oncology department, Oncology Excellence, Pain, pain diminished, Pain Management, Pain Management Department, parents of children with cancer, platelets, PrimeASCENT, protocol, reduced clotting, relapse, relapse treatment, relentless nausea, remission, roadmap, secondary infections, severe chemo burns, spinal headache, spinal tap, standard protocol, Tangents, transfuse, Treatment, treatment support, weight loss
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Friday, April 29th, 2011
Survivorship increased from 3 million survivors in 1971 to an estimated 14 million in 2010. It is wonderful to see that the hard work and research is paying off.
The following chart from the National Cancer Institute gives a clear picture that cancer treatment in America is improving and that the number of cancer survivors is increasing dramatically every year.
But why should a cancer center care about survivors when their focus is about treating the cancer?
Cancer survivors rarely complete treatment without facing at least one issue long term. Many cancer survivors suffer from physical and/or psychological issues. The survivorship journey is unique to each person. While some people are able to embrace life again after surviving cancer, others become anxious about the possibility of a recurrence and are uncertain about how to move forward after treatment. Some develop cognitive or physical disabilities after treatment ends. Even if a patient is lucky enough to get through treatment without any physical or psychological effects, he or she may still feel isolated after losing friends during the treatment process. In addition, they may have difficulty connecting with other people who have not experienced the trauma of dealing with cancer.
Targeting programs to address these survivorship issues will help to round out your cancer program offerings. Survivorship programs can be based simply on periodic monitoring for recurrence and sponsoring support groups. At its best, survivorship programs should include a range of services to not only watch out for recurrence or secondary cancers but also to ensure that patients can successfully adjust to a new normal, while addressing their physical and emotional needs. Last but not least, survivorship programs offer an excellent opportunity to provide an important feedback loop to improve the treatment processes and protocols.
In “Our New Future”, the April 18 article written by Deborah Boyle on cancernetwork.com, some interesting survivor statistics and costs are reported. For example, over 60% of survivors are over 65 years old. The baby boom wave must be considered as survivorship programs should also include the needs of older cancer survivors.
Survivorship programs offer a win-win for both patients and healthcare providers. Patients benefit from better services that enable them to resume their life as normal and as comfortably as possible, while healthcare providers benefit financially from services that generate additional revenues.
As the population of survivors continues to grow, so does the awareness that survivorship follow-up and programs are needed.
How well is your cancer program preparing for an expansion of services beyond treatment?
If you have any questions, contact PrimeASCENT by calling 410-444-6024 or click here today!
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1 Data source: Altekruse SF, Kosary CL, Krapcho M, Neyman N, Aminou R, Waldron W, Ruhl J, Howlader N, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Cronin K, Chen HS, Feuer EJ, Stinchcomb DG, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2007, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2007/, based on November 2009 SEER data submission, posted to the SEER web site, 2010
Tags: are about survivors, better services, cancer center, cancer survivors is increasing dramatically every year, cancer survivors suffer from physical and/or psychological issues, cancer treatment in America, develop cognitive or physical disabilities after treatment ends, embrace life again, excellent opportunity, healthcare providers, improving, Maryland, National Cancer Institute, physical and emotional needs, PrimeASCENT, research is paying off, services beyond treatment, sponsoring support groups, successfully adjust to a new normal, Survivorship increased, Targeting programs, Why Survivorship Programs Matter
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