Patient Rights and Raising the Bar

An oncologist, radiologist, and surgeon all walk into a bar. Each was feeling frustrated because each felt he was more responsible than the other in successfully eradicating a patient’s cancer. In the midst of their heated discussion, a nearby bar stool swiveled to reveal the very patient they were debating (it was a juice bar). “You all have been a vital part in my healing, but I AM the most important factor in healing my cancer.” Each doctor was struck speechless, whereupon the patient treated each to a nutrient and antioxidant rich green smoothie.

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Image credit: pixabay.com

I’m feeling fired up today about many, many things related to health care.

Do you realize how empowered you are? YOU are the common factor that ties your specialists together. Good communication is key. Sure, they discuss your care without you, but you get to integrate that information together. It needs to make sense to you. It affects you the most. YOU are the one who has sought out complementary treatments and again the person fitting all these pieces of your health puzzle together. YOU have done the research and made informed decisions. They all work for you and your interests. YOU are the CEO of your team. That’s powerful.

A lot is being done TO you. You may feel out of control. You have rights. Knowing your rights is empowering.

  • Having complete and accurate information from your doctor about your diagnosis, treatment, and prognosis tops the list.
  • As a patient, you are entitled to privacy regarding your medical care and records.
  • You have the right to quality care and treatment consistent with available resources and standards of treatment.
  • You have a right to refuse treatment and be informed about the consequences of that decision.
  • You have the right to care and treatment in a safe environment.
  • Another big right is that you have the right to considerate and respectful care.

I want to add two additional patient rights.

One: The right to demand more research and more effective treatments for advance stage cancer.

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Image credit: pixabay.com

It seems to be an idea I keep repeating over and over. Tell your oncologist, radiologist, and surgeon. Make phone calls and write letters to administrators of treatment centers and hospitals. Find a researcher who would love to give you a tour of their lab and share what is being worked on.

I think this is a great way to create a direct line to the front line.

It also provides a face to the work the researchers do, even though I think many researchers went into their chosen profession because of loved ones who’ve been lost to illness. Every new face can continue to motivate researchers.

Touring a research lab certainly will better my understanding of work being done. It’s on my list of things to do. Spread the word to non-medical people (family, friends, coworkers, followers, etc.) so they can spread the word on the urgent need for more research for advance cancer. When more people speak up and demand more, and keep demanding more, there is a better chance that people will get more. I ask for more all the time.

Two: The right to have more equality and power with pharmaceutical and drug companies.

I feel this is an uphill battle but one worth having because those needing drugs are humans with feelings and deserve whatever can help them feel better. This one relates a lot to the aforementioned right to CONSIDERATE and RESPECTFUL CARE. It is neither when you are treated like you don’t matter or are insignificant. THEY are there for ME, not the other way around. Too often the latter is the norm. I could easily throw insurance companies to the mix.

I am tired of feeling exhausted with efforts to make a positive difference, but I will keep working to do so for myself and for others. I am so sick of arguing and jumping through hoops for what I deserve in order to be well. I have mentioned this point in earlier posts: I’m well enough to argue for myself and hoop jump, but what about the patients who are physically too tired or weak to do so? Those who are sick are vulnerable just like any other powerless or marginalized segment of society. Take your pick – there are plenty of “others” in society. They are discounted. Laws and policies do not work in their favor.

Here’s more depressing news – the cancer the specialists argued about eradicating in the beginning of the post may not have been eradicated. It should be part of the complete and accurate information you get from a doctor about a cancer diagnosis and prognosis. 30% of cases recur or may metastasize. Unfortunately, it could still be lurking, biding its time. A new cancer can also grow. You, being extremely empowered, need to know this is a possibility. You, being extremely empowered, need to stay vigilant in understanding your risks and the red flags that may suggest secondary cancer. I apologize in advance if the following freaks people out. It freaks me out, too, but I feel it needs to be shared. Jo Taylor is the founder of After Breast Cancer Diagnosis and a patient advocate living with secondary breast cancer. She can be found on Twitter @abcdiagnosis and her website is abcdiagnosis.co.uk.  The graphic below (used with permission) illustrates warning signs that should be on everyone’s radar.

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Years ago, I felt a little tired but just chalked it up to the demands of my job. A lot was going on personally for me as well. These things could very well have been why I felt tired. Many people are fatigued who do not have cancer. Cancer was the farthest thought from my mind. I have no idea of knowing for sure.

Although the above symptoms pointing to a reality (or possible reality) for some is depressing or upsetting, knowledge is power.

Let’s talk about the term healing. Semantics can be tricky. Healed cancer, treatable cancer, cured cancer. Can you be healed without being cured? I think the answer is yes. Healed is more of an element of mind and spirit. Healed and cured are probably the most synonymous. You can be healed and still have treatable cancer. You can be healed and have curable cancer. You can be cured, but not healed. And you can not be healed while having treatable cancer. I still hold fast to the idea that you are the most important factor in your healing as you have to decide what you are going to allow and how it works for you.

It’s time to get back to the doctors who walk into the bar. They may continue to argue. They may nod politely at your declaration. Perhaps they believe you. When you assert that you are the most important factor in your healing, you raise the bar of expectation in doctor-patient relationships. You change how you are perceived. You may even change the treatments offered to you. Maybe you find something that is a possibility for you that your doctor hadn’t considered. You are important. You matter. Your voice matters. The bar is important.

A patient, researcher, and leader all walk into a bar. Here’s the punch line: They are all the same person . . . you. Being an active member on your cancer care team ensures that no aspect of your care is taken for granted. Your team is accountable to you, as it should be. And here’s even more good news: The oncologist, radiologist, and surgeon have been waiting for you. They wave and welcome you to your seat at the table.

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Image credit: pixabay.com

Consider responding:

  • How do you feel you are a part of your team for your health?
  • Are there any other rights you’d like to add to your personal list of patient rights?

 

Buttober: All Research Dollars Are Not Equal

Breast Cancer Awareness Month is in October. Fundraisers abound whether they are runs, walks, auctions, or other special events. All females of a certain age are reminded to do breast self-exams. Almost every day there is a news story featuring a survivor. I am grateful for the awareness and any funds that go toward finding a cure.

Welcome to BUTTOBER.

Yet, there is a “but” in all this, or more appropriately a butt.

My feelings about breast cancer awareness month have become mixed. The efforts in fundraising and raising awareness are impressive. How funds are appropriated toward research is a kick in the keister for anyone wanting more dollars to go toward MBC treatments. Whenever I donate to the cancer research center of my choice, I click on the drop down window indicating I want the money to be spent on breast cancer research. I thought it was shared evenly with breast cancer research going on for all stages. I thought wrong. The bulk of breast cancer donations go toward prevention and early stage research. The percentage of donations going toward MBC research is typically in the single digits. That leaves too many breast cancer patients feeling isolated, forgotten, or that our lives aren’t worth as much as early stage lives.

Our lives matter a lot.

I contacted the major gift officer at the cancer center where I choose to donate. She agreed the percentage was low for donation allocation to MBC research. I was unable to get a definite percentage pinned down in our conversations. Projects were referred to relating to metastatic outliers, circulating tumor cells, cancer biology, and clinical trials. Even with these various projects, it seems a percentage in the single digits would be realistic with information available on what is being done in other research settings.

I find that unacceptable.

Here are names of specific funds and foundations where dollars go specifically to metastatic breast cancer research:

The More for Stage IV Research Fund is a separate breast cancer fund where 100% of money donated goes specifically toward metastatic breast cancer research at the UW- Madison Carbone Cancer Center. You can’t get to this through the official Carbone Cancer website; you must first go to the “One Woman Many Lakes” site.

Click HERE to learn more about the More for Stage IV Research Fund where donations go to the Carbone Cancer Center.

METAvivor funds metastatic breast cancer awareness, research, and support. Information provided on their site says 100% of all donations go to MBC specific research grants.

Click HERE to find out more about METAvivor.

I admit I had trouble tracking down others. I kept hitting a snag where metastasis was mentioned in a search, but then I couldn’t find anything specific at the site. When I did, I got the feeling only a small portion of what was donated went for later stage research since it wasn’t emphasized more heavily. Then I realized the brick wall I kept running into was precisely the problem – there simply wasn’t enough research being done for MBC and that was why I couldn’t find resources to share! I would be happy to be wrong here as it would mean more of this type of research is commonplace. Breast cancer that is contained to the breast and stopped there doesn’t kill people. Its spread to other areas, however, does, and it would stand to reason that this is where the majority of time, resources, and research should be spent . . . BUTT it is not.

Big time Buttober.

Please call ahead wherever you choose to make a donation and inquire exactly where your money is going if it is unclear to you.

How else can you advocate for more research for MBC?

  • Know where your money is going when donating to cancer research. All research dollars are not equal.
  • Call the major gift officer in charge of fundraising where you want to donate and find out what percentage of donations go toward research in finding new medicines and treatments for metastatic cancer. This person should be able to put you in contact with the right person who can answer more specific questions on research if needed. Let them know you want more done to move advanced stage cancer research forward.
  • Let others know what you learn. Use social media, write op-ed pieces, and suggest a news story.
  • Demand more from your local, state, and national politicians. Health care means health care for everyone! I am for prevention. I am for curing early cancer. I am all in for supporting research to find cures for all of it, regardless of its stage.
  • This idea may be more fun. The #KissThis4MBC campaign takes place through October on Twitter. Everyone who shares a selfie or boomerang using the hashtag #KissThis4MBC will have $15 donated to @metavivor and @MBCNbuzz by the group @Novartis (up to $200K). Check them out, as well as my pic at @kkbadger1. Say cheese!

Demanding that more research dollars be spent on treatments for advanced cancer is just as important as money spent on prevention. Transforming attitudes to focus on living with unrelenting wellness is part of the needed change.

Find a way.