Symptoms: The patient forgets to eat, which leads her to lose consciousness in public. She has been hospitalized for malnutrition and dehydration. She is forgetful and repetitive in her conversations and written communications. She appears to be increasingly frail and unkempt.
Patient's support system: Never married and without children, she has one sibling, who is aware of her decline and wants her to move to a "retirement community". Other possible support comes from the reader and associates at the company that formerly employed the elderly woman. They want to suggest that she hires home care help while she considers a "retirement home".
Advice columnist's view: Talk to the friend (who is having communication issues and may not comprehend). Do some research through the local office on aging and present the patient with options that will allow her to remain at home (assuming the dementia diagnosis is accurate). Try to visit frequently. Do things with the elderly friend. And if things are dire, contact the sibling (presumably to intercede).
On the surface, it all sounds like a good working plan, except for one thing. The 75-year-old woman is battling breast cancer.
In the past year, I've lost two family members to cancer. I've also been there for two cancer surgeries for another relative. And, sadly, I had a beloved relative who had advanced breast cancer that was never diagnosed, despite multiple visits to her physician and complaints. When that breast cancer spread to her bones, every bit of her body ached and she suffered enormously. She could have been helped by proper cancer care, but because she was elderly, she was treated for age-related issues. That is a lesson I will never forget, because the people who loved her were unable to help her. When the aches and pains an elderly person experiences are chalked up to arthritis, dementia, or any other age-related issue, that patient will not receive the appropriate treatment. There will be no palliative care for the pain, no treatment for bone mets, and no help with issues such as nutrition and hydration.
So, what did I do when I read the advice from the nationally recognized advice columnist? I contacted her, pointing out the very real possibility that the problems the elderly woman was experiencing were actually the result of the breast cancer. It might have invaded her brain. That's not an unusual thing with breast cancer, is it?
There is also the very real possibility that the decline in mental function was the result of powerful chemotherapy drugs and/or other treatments. Many breast cancer patients are familiar with the annoying and debilitating effects of "chemo brain."
Anyone familiar with cancer patients and the challenges they experience knows that the malnutrition and dehydration issues raised by the reader can be symptomatic of the breast cancer. That's why many cancer centers have nutritionists that work with families to assist in providing nutrition to the patient that is tolerable under the circumstances.
And let us not fail to consider that this 75-year-old breast cancer patient could be depressed with her circumstances. Having breast cancer can bring the strongest of us to our knees. I have a number of friends who are breast cancer survivors, married and single. They have shared their insights in ways that are now permanently etched on my mind and in my heart. Having breast cancer can be a very lonely, isolating experience. Good support is critical in surviving the brutalities of the disease.
The response to me from this nationally acclaimed advice columnist was less than stellar. She was offended. She took umbrage at my response to her advice. She tossed in a tiny little, "could be the cancer", which was apparently meant to make her appear to be flexible on the subject. But she stuck to her guns that her advice was appropriate. It wasn't. Why?
By sloughing off the 75-year-old woman off as being elderly, she had actually provided harmful, not helpful, advice (which raises the question of liability should the 75-year-old breast cancer patient be involuntarily hospitalized for dementia if the cancer is causing the problems). She allowed the "dementia" label to stand. She didn't correct the reader or open the possibility of some simple ways to help the cancer patient.
What would be MY advice? First and foremost, if a woman is battling breast cancer, recognize that's a medical diagnosis. That means somewhere, at sometime, an oncologist has treated the disease. We also know the patient has been treated for malnutrition and dehydration in a hospital. Is she still being treated or did treatment end? A scan could reveal a brain tumor pressing on the part of the brain that involves executive decision-making, for example. That's not a matter of guessing that the patient has dementia. That's a medical opinion backed up by scientific testing. Has that been done?
Hospitals and medical centers who treat cancer patients normally have cancer navigators, patient advocates, social workers, and a myriad of other support services that can assist a 75-year-old woman who lives alone, but has people to care about her. There is no need to go to the local office on aging for advice on anything.
But there's a glitch, a very big one. HIPAA laws prevent unauthorized people from getting information on a patient's situation, and rightly so. Obviously, the reader and her associates can't call the medical center to find out how they can help. The 75-year-old breast cancer patient's sibling might be able to do so, however. Normally, if someone is that debilitated by illness, a relative is essential in helping to navigate medical treatments, insurances, and other related issues. What is his involvement? Does he have power of attorney? Does she have an independent conservator? Who is helping this woman get through her treatments (or is she struggling on her own)? That's the "go to" person. Every cancer patient needs one.
Thus, the best starting point would be finding out who is the "go to" person for the elderly friend. Who accompanies this woman to her treatments? Or has she been struggling with this issue by herself? Has she stopped treatments because she's been too debilitated to get herself there? Is she terrified she's dying and in denial? The reader and fellow co-workers could offer to drive her to and from treatments, couldn't they? They could volunteer to stay with her during her treatments. They could be there when the side effects sideline her. They could find some positive ways to improve the quality of life for the patient that address her real needs, not her assumed needs. But they need to know who the "go to" person is and coordinate.
The minute anyone reads that a person with a cancer diagnosis has experienced a decline, it automatically becomes a medical issue. Whether it's the cancer, the complications, or the stress of the disease, it's critical to properly assess the patient's condition, setting, support system, and services. No 75-year-old woman should be assumed to have dementia based on the observations of well-meaning, but untrained lay people.
The greatest danger that this 75-year-old woman faces is that she will be placed in a skilled nursing facility by her sibling because it is assumed her mind is failing due to dementia. If the real problem is that her breast cancer has metastasized, she could suffer through what remains of her life. She could be medicated with drugs used to treat dementia and not treated with drugs that would provide comfort at the end of life.
But the one point I would make here is that we don't know what kind of relationship this 75-year-old breast cancer patient has with her cancer team. For all we know, they have done all the tests, diagnosed the disease accurately, and treated the patient humanely. If that is the case, perhaps what this patient really needs is the love and support of family and friends. Maybe she doesn't know how to ask for it. Maybe she doesn't know she can get it. So often, communication is a critical tool for a cancer patient, whether it's talking to the oncologist or explaining problems outside the hospital setting. That nationally acclaimed advice columnist should have suggested that the reader and her associates find out more about how to help a woman dealing with breast cancer. There are plenty of good resources for that, ranging from The American Cancer Society to #BCSM, better known as Breast Cancer Social Media, formed by the late (and wonderful) Jody Schoeger and her social media partners, Alicia Staley (a great cancer advocate better known as Awesome Cancer Survivor) and Dr. Deanna Attai, a well-respected surgeon on the UCLA Breast Care Team.
I mentioned Jody Shoeger because I had the pleasure of interacting with her at a cancer blogger conference out in Arizona several years ago. She was the epitome of a wise and caring counselor for breast cancer patients, often reaching out to those who felt marginalized, isolated, and alone. She taught me about making assumptions one day, by correcting me -- not all breast cancer patients have adequate support. I will never forget one post from her. She let a breast cancer patient anonymously share her painful personal story of being shunned by her husband once she was diagnosed. I have never been able to let go of that tale. It follows me wherever I go. It makes me determined to speak for those who don't have the strength or the confidence to ask for help. I owe it to Jody now to share this with you. If you know a woman who is battling breast cancer, don't throw your money into all things pink. Reach out and help in real ways. Learn what life is like for breast cancer patients and find out what you can do to help improve quality of life for a woman who is struggling. That's what a real friend does.
