The Ethical Perils of Immunotherapy:  Medical Care or Extortion? 

8 thoughts on “The Ethical Perils of Immunotherapy:  Medical Care or Extortion? ”

  1. Thank you for sharing this story Leah. This October will be 5 years since my mom Norma’s death in AZ. Reading this brings me to tears. I am saddened that she was so uninformed about her disease. She also had a subclavian port placed by CV surgeons for anticipated treatment (Keytruda) which was never used because I arrived & intervened in her care. She paid $500.00 co-pay for that procedure. UGH! Keep up your good work; people need nursing advocates!!!
    Linda Kowalczuk, APRN, ANP-BC

  2. Dear America,
    Thank you for this article. I admit I read with increasing horror and a growing knot in my stomach, to the point where I almost had to stop. Then came the disgust, and the increasingly repetitive feeling of sheer incredulity I feel on a daily basis when looking to “the greatest country in the world” (self-described).
    Two issues are snaking up through the words in this article. The first, most horrific, and obscene one is the lengths to which capitalism has destroyed the US. Harsh?
    I live in Australia. I work for a Community Palliative Care Service. We generally accept patients who have roughly a 6 months prognosis (who can really say, right?). We accept pts and families who may only need psychosocial support, we regularly discharge patients and may admit them at a later date if required. We will visit daily if required. We have a team of general community nurses who will conduct stable palliative monitoring, and visit daily as needed. There is access to OTs, Speech pathology, Exercise physiology, breast care nurses, social work and counseling, Specialist Palliative care physicians and NPs for consultation. This service is offered regardless of whether a pt is receiving treatment – they often co-exist, and we even have a model that illustrates this blend of PC and “curative treatment”. And apart from some nominal fees for visiting nurses (eg $7/wk) this service is FREE. ALL FREE. No one has to bankrupt themselves. No-one has to rationalize their lives away or die in abject poverty. I simply cannot fathom the pervading existential distress that you must experience on a daily basis, living without health security. And now to read about the financial rorting and exploitation that inevitably exists when you try to privatize a basic human right.. well, it’s sickening.
    My husband received effective, life-prolonging treatment at $17,000/month for 10 months, then 3 rounds of immunotherapy without paying a single cent. He even had his end of life medications paid for by the Pall care service.

    I am sorry you have to go through that, but the worst thing is that, as I’m sure you know, it is totally unnecessary.
    My heart goes out to you all.

    The other issue raised is the increasing lack of health literacy within our general population. You have no monopoly on that I think. It seems to be all-pervasive. Not only health literacy but death literacy. I believe that for every person IN a bed in a hospital, there needs to be someone at the END of the bed, looking out for them, asking questions, advocating.. Patient advocacy has never been needed more, as treatments become more and more complex and confusing, coupled with the denial of death we see on a regular basis. I love your term “non-goal concordant care”.. it almost pokes fun at the medical gobbledy-gook, and shoots back with a polite but firm “no thank-you”!

    Here is where the end of life/death doula/midwife role could be so well utilized. People who have a passion and commitment for “goal concordant care”, for ensuring quality over quantity and helping their clients to explore questions of mortality, legacy and what a good death really looks like for them.

    Phew. That was a bit of a rant! Sorry!

    Again, thank you for the article. I can’t imagine how difficult it is for all you practitioners operating in such an environment. All power, love, and respect to you.

  3. My mother chose to do immunotherapy. No one in the family put pressure on her. She is already more than a year into immunotherapy treatment. I believe she was the first patient or one of the first on the treatment she was started on as that form of immunotherapy was approved last summer. I believe they even tested her tissue with it before she started. It showed she should have success with it as I remember correctly. Doctors should be forthcoming with how serious things are and what the likelihood is they will live 6 months, a year, or 2 plus years. I think she actually is doing better on this health-wise than she did with radiation and whatever else she was on, They wanted her to do chemo again, but she had such a hard time with that she said she would never do it again. It should be on option out there for those who want it.

    1. Of course she should, I wouldn’t imply otherwise. I just don’t like the lack of teaching and assessment of patients goals, wishes, knowledge that leads to uninformed choices. Your mom looked good last I saw her, I pray she does well for as long as possible and is able to spend time on meaning activities such as visiting with you.

  4. Thought provoking piece. It is a deep challenge to weigh the values of a patient often compounded by the fresh and pressing nature of decision making that often comes with a cancer diagnoses. I see patients in the inpatient setting. An added challenge I often encounter is the oncology note that reads, “will discuss treatment options in outpatient follow up.” I wish I could read or hear the language used to present the option of immunotherapy. I try not to be biased by the return admission of patients with complications of immunotherapy or progression of disease. At a minimum, treatment should not be initiated or offered if time to potential response exceeds apparent life expectancy. I fully acknowledge that prognostication is not an exact science. As I said, thought provoking.

  5. This is so touching Leah thank u for such a amazing article, i totally am baffled by all this. years back i lost both my parents in the 80s from cancer then it was much different, treatments etc however it is very true that drs need to be honest and forward with information to their patients i know science has come along way since the 80s. but there are so many clients i have taken care of being a cna, that have been misdiagnosed & found out it is to late until patient is on hospice. What is the right thing to do… in my opinion its always honesty and drs should always let patients know sometimes the suffering is way worse… with treatments that are just making u more miserable with the disease, hard on families to watch also. thanks for all this wonderful knowledge & wisdom u truly are needed!!!! Kim T

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