Cultural Perspectives
When I was growing up in Mumbai, India, one of my neighbor’s mother would make regular visits to the Tata Memorial Hospital, one of the largest Comprehensive Cancer Centers in Asia. By then I was a medical student at the Medical School in this Hospital Complex. I offered my help, but her children declined it saying that their mother did not actually know her diagnosis. I asked them why she thought she was going to the Cancer Center, and why she was feeling worse.
“Oh, we have told her that she is anemic, and she is getting shots to help her”. It turned out that she had acute leukemia, declined rapidly, and died within a few months. Apparently, she was never told why she was so sick. It was not unusual to think that the elderly parents would not be able to handle the grave diagnosis, and would get severely depressed and die faster.
Since I have been practicing in the United States, I have encountered this same request from families of recent immigrants. It is hard to navigate the balance between our culture of full disclosure and the culture of withholding of potentially depressing truth. In addition, often there is a language barrier, and often the caretaking children refuse a professional interpreter. They prefer to do the translating themselves, clearly filtering out what they do not want to translate.
It puts treating physicians in a difficult spot. Our primary responsibility is to the patient, especially if they are competent to make their own decisions. On the other hand, we do not want to upset the family dynamics. The children are going to be the main caregivers. It there is a conflict for medical decision making, the patient is at the mercy of the children.
I try to counsel the children that their old parent is aware that something is seriously wrong, which is why they are in my office, or in the hospital. Withholding information can increase anxiety. If we can acknowledge their diagnosis, we can assure them that their pain will be adequately managed, that they will not suffer. I assure the family that I will be gentle in the discussion, that we will address the diagnosis and symptoms and potential treatment. I will answer the question “how long do I have to live” only if asked.
I often break through the family barrier with this approach. If I still meet resistance, I insist that I have to satisfy my professional obligation to the patient. I need to ask the patient if he/ she wants to be part of the conversation, or wants to defer it to the children. After that, we move forward according to the patient's preference.
Reconciling old world practices with modern medical practices requires some give and take on all parts. Families need to understand that the dying person knows that they are dying. If we acknowledge it, there is opportunity for trust building and reassurance that their physical and medical needs will be addressed. Also, there is time to fulfill religious needs and resolve family issues.
On our part, if we get a broad sense of what the patient wants, we can respect the family dynamics.
What do cancer treatments cost?
The shameful answer is most of don’t even know what each component costs. And there are many components.
This question has come up during my informal consultation with friends and relatives who were grappling with the difficulty of having a parent go through cancer treatments several continents away. They couldn’t leave their jobs for an undetermined length of time to go take care of them in their native countries. The elderly parent couldn’t be insured for cancer treatment if they were brought over to the United States. So if they were to consider bringing them over, they wanted to know what the treatment would cost.
First, there is the cost of the consultation, which is made up of two components: the physician fee and the facility fee. Add on the cost of baseline tests: blood work, x-rays, CT scans. A biopsy would be done for confirmation of the diagnosis, which would include procedure costs (professional and facility costs) and pathological examination of the tissue. We haven’t gotten to the treatment part yet.
I picked a standard drug regimen, to see if I could find out the cost of delivering the treatment at our Cancer Center. It is a commonly used combination, so I started with our Pharmacy department. We have billing codes, but it was difficult to tease out what we got paid. They could find out what they charged, but not what we got paid. It was impossible to add on the cost of the infusion chair time, the nurse, the intravenous tubes and needles. One could have gotten the cost of the prescription anti nausea medications and antibiotics from the local retail pharmacy. And if there were any complications, one would have to add on the cost of an emergency room visit or hospitalization. And this was just one cycle of chemotherapy. Multiply that by 6, or more, if those were the number of treatments required. I could not come up with an estimate.
As we get into more biologic therapy, and targeted designer drugs, just the cost of the drug alone can be $5-20,000 a month. Treatments can last for 6 months to more than 3 years. We have been fortunate to have an insurance system that covers the expense for most people, but we should at least know what it costs, and what benefit it buys.
I assume Insurance companies would have been able to provide me the cost per cycle, since they pay the bills. Our business department is just making sure that we get paid for the services provided.
But we are doing the prescribing, and we should know. We should be able to provide that information to our patients, if they want to be informed patients. And they need to be. As more chemotherapy shifts to oral formulations, or more co-pays are shifted to the patients, it behooves them to pay attention. The designer drug that is added to standard chemotherapy in their terminal cancer may buy them less than an extra week of life. This is not rationing; this is called using limited resources wisely. We have a lot of fantastic new treatments that are being developed; we will have to find a way of paying for them without breaking the system.
George H.W. Bush was thought of as out of touch because he didn’t know what the price of a gallon of milk was. He had probably not bought a gallon of milk for himself for years. But we do prescribe treatments every day. It is shameful that we don’t know.
McDonald’s has to post calorie counts for their food items. We should have access to the knowledge of what cancer treatments cost.
I met Jane in 2004. She had just been diagnosed with breast cancer, and was a mess. I didn’t know then what she was more distressed by; the cancer, or the fact that she was not handling it well. She was a successful businesswoman, and had overcome many previous obstacles in her life. This one had derailed her.
She had her surgery, which involved a lumpectomy and lymph node removal from her armpit. The lymph nodes were clean and the primary tumor was completely removed. It was under 2 cm, so this was a Stage 1 cancer. She came to our Cancer Center, and consulted with the head of our program.
Unfortunately, the cancer cells had poor prognostic features: poorly differentiated, hormone receptor negative and over expressed her-2 neu. This meant she had a higher risk of relapse that the others in the Stage 1 group, and she needed post operative chemotherapy, in addition to radiation therapy. In 2004, the standard recommendation would include 4 treatments of a 2-drug combination of Cytoxan and Adriamycin. Some would have added another 4 treatments of Taxol, because of her hormone receptor negative status. Others may not, given her clean lymph nodes. In 2004, we did not have Trastuzumab (Herceptin) for her her-2 over expression.
Jane freaked out. The oncologist who saw her spoke with others in our referral pathway, and came back with a strong recommendation that she do all 8 cycles of chemotherapy. All they looked at was her pathology report, but not at Jane. She was about to walk out and not get any treatment, but decided to come see me for a second opinion. Somehow, I was able to peel her off the wall. We discussed the pro and cons of the 4 vs. 8 treatments. I assured her that it was not critical that she undergo the additional 4. We would work with her, and get her through the 4, and take it from there.
She did that, and did well. I held my breath for the first couple of years. 8 years later, it appears that she is out of danger. Now, I want to discharge her, but she doesn’t want to go. We see each other annually, and all is well.
We have to listen to our patients, and take into account real and perceived benefits of treatment, and balance them against real and perceived fears of treatment.
I walked into her hospital room, and found a frail, confused 89 year old lady, who thought she was in her home, waiting for her (deceased) husband to come home. Her distraught adult children sat on the sofa, waiting for the oncologist to advise them on the next step. She had been noted to have a persistent cough for a few months, and had slowly dropped her weight and functional state. She had gone from being fully mobile a few months ago, to being confused and dependent on people to take her to the dining hall at the retirement home where she lived.
Her family took her to her primary care doctor, and a chest x-ray, and then a CT scan showed some shadows in her lung, and in the lining surrounding the lung. First, she had a biopsy under CT scan guidance, which didn’t yield an answer. Then she had a mini operation, which inserted a camera between the ribs, into the lining of the lungs, to extract some tissue for diagnosis. This had been unsuccessful in establishing a diagnosis as well. Now she had been admitted to the hospital with increasing weakness and confusion.
Her admitting team didn’t know which direction to take next. That is when I entered the picture. While I gathered information from her children, I sat on her bed, and held her hand. And as I presented the options, I thought I should present the one that had not been suggested yet. Everyone else had been barreling down the path of more tests to pursue a diagnosis, and I suggested stepping back and asking the question, why?
Will finding the diagnosis do anything for her? She’s frail, and 89 years old. Another attempt diagnosis would involve an operative intervention. A third attempt may yield a diagnosis of cancer, which is really what we suspected. Then what? The involvement of the lining of the lung, and her age precluded surgery and radiation. Again, given her age, and functional status, she wouldn’t really be able to undergo chemotherapy. Chemotherapy would not be curative, and may not be a fruitful exercise.
The son and daughter were very upset. “How do you know it IS cancer?”
“We don’t, but it points in that direction. But it can certainly be pursued with another procedure to establish the diagnosis. There is a risk of developing an air leak, postoperatively, and needing a chest tube for drainage. If getting the diagnosis helps her live longer or better, then it is worthwhile. But if it does not, then we may be putting her at risk for no good reason.”
“How long do you think she has?”
“Well, if she has lung cancer, and it’s Stage 4, it depends on how fast it is growing. Untreated, if it is fast growing, then the life expectancy can be in the range of 6 months. If it is slow growing, she can live for up to 2 years. In that time, we can take care of her any of her symptomatic needs, pain management, nutritional support, and make sure she is comfortable.”
The children were very upset. I suggested that they should think about their options; they could let the team know about their wishes when they came to a decision. I walked away from this encounter an hour later, feeling that we had had a meaningful discussion. I handed over the baton to my colleague, to follow up the next week.
As it turns out, she did have another surgical procedure. Fortunately, she did not have a complication. Unfortunately, she did have a malignancy of the lining, called a mesothelioma. In the end, she could not be treated with any treatment, and was discharged back to the nursing home for care and comfort measures.
What is the right thing to do, and whose interests are we serving? Is this lady, or anyone better off getting a diagnosis? I can understand that a distraught family does not process what they are hearing. Families can demand futile interventions and some physicians do not have fortitude to withstand such pressures.
My concern for the future of the American medical system is that none of the well connected and well regarded physicians advising this family thought it appropriate to stop intervention. And this is not good care for our sick and elderly patients.
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