“A Nuanced Approach to Autonomy, Culture and Paternalism”

The Cancer Network has an excellent and thoughtful article on the subject of communication between oncologists and their patients. I am glad to see the article is available free of charge to anyone who clicks on this link.  Good, this way we can hope a lot of ordinary patients get to read it too, not just medical professionals.

The article deals with problems of patient’s rights and autonomy, various levels of paternalism on part of the doctor (not always to be disdained), cultural differences in how human beings handle life-or-death situations.  I strongly recommend you read the full article for yourself, it just takes a click of your mouse and a little of your time.  Whether you are a patient or a caregiver, this is an article that I hope provokes a good discussion among our members.  For a change, you don’t have to read through my long-winded explanations, the article is easy to understand and speaks for itself rather well.

Here is an example from the article, just so you know the kind of issues it discusses.

Mrs. Kimat Met (pseudonym), a 37-year-old ultra-orthodox Jewish mother of two small children, presents with metastatic pancreatic cancer with extensive liver metastases. She is weak and cachectic. Given the very advanced disease and her poor performance status at presentation, the outlook is poor and the likelihood of substantial benefit from chemotherapy is small. The family, who were told of her diagnosis by the diagnosing surgeon, request that you not tell her how serious her condition is. They explain that in their culture any information should be given to her husband, and that he and his rabbi will decide what is best for her to know.

At times when her family has not been present, the patient has repeatedly remarked to the junior resident that she wants to be told what is happening to her.

You, the attending of record, sit by her bedside and take her hand. She turns on her pillow, looks you in the eye, squeezes your hand, and says, “I want to live! I need to see my children grow up! I need you to give me hope! I am the sick one here but I feel like no one is talking to ME.”

Questions abound:

• Are you going to tell her what is going on despite the explicit request of her family?

• How much will you tell her about the grim prognosis or the low likelihood of benefit and the potential for harm from treatment?

• Does her plea for hope demand that you hold back on disclosing the full scope of the impending tragedy?

• Without all of the information, how can she possibly make an informed decision about whether to receive what will probably be ineffectual and possibly harmful chemotherapy?

The article goes on to discuss various options that the oncologist can try.  Interesting reading, as I said above.

Editorial

My blood boils every time I hear of an arrogant physician who will not take the time to listen, who treats the disease or the lab numbers, not the human being in front of him.  Heavy handed paternalism does not work for me, however well intended it may be.  As I mentioned in a previous article, we do not sign away our unalienable rights of life, liberty and the pursuit of happiness just because we happen to be cancer patients.  Medical jargon may not be our forte, but that does not make us stupid or incapable of understanding issues that define our very existence. Damn it, as the consumers that pay for every single dollar spent on healthcare, the least we deserve is a bit of respect!  Whatever happened to “the customer is always right”?

But it takes two to tango, and in all fairness we cannot place the entire blame for botched communication on the shoulders of oncologists. There is another side to this problem of complicated communications.

The example from the article I cited may sound a bit extreme to you.  Believe me, it is not.  I am not an oncologist.  My role is far more limited – I am merely a patient advocate.  Yet, I too have seen my share of similar problems.

  • What do I tell a newly diagnosed patient who writes to me, clearly looking for my validation of the latest nonsense herbal cure – and tells me in so many words that she cannot bear it if I tell her it is so much snake oil?
  • Or how about the 75 year old desperately seeking optimistic survival odds for stem cell transplants for people his age?  And takes me to task for writing about poor survival statistics for people who have totally flunked FCR – as he has?
  • How do I convince a patient deathly scared of dying of chemotherapy toxicity that she would die a lot sooner if she refuses necessary and sensible therapy – notwithstanding the adverse effect profile of chemotherapy?
  • What do I do with all the lost souls who ask me to pray for them, rub the belly of the Buddha, cross my fingers, anything, just so long as I tell them pretty little lies?
  • And where in my heart do I carefully wrap and tuck away the pain and hurt of patients who dropped me like a hot potato after my husband P.C. died – possibly because I have become a bad luck talisman in their eyes?
  • What should I do with patients who insist on asking  me to make all the tough medical decisions for them because they cannot handle them and there is no one else?  In a sane world that is a level of responsibility that no patient advocate deserves.  Family, close friends, spiritual guides – these are the people that should be the ones handling such tough calls.  But it seems that sometimes our over-crowded world is also a very lonely place – especially for people who are sick or facing a patch of bad luck. And we all depend on the kindness of strangers.
  • Last but not least, what do doctors (and patient advocates) do with patients who ask them to perform miracles – when they too are mere mortals?

Mind you, I am not complaining.  Very far from it. I am overwhelmed by the honor you do me – with your trust and affection.  Like many wonderfully hard working and sincere healthcare workers, I wish I was more worthy of it.

The very least I can do is fess up.  Here is the skinny my friends.  We are all human beings, all of us with  huge, ugly clay feet making a mess where ever we go.  That is built into the DNA of being human.  Don’t expect miracles of us.  And don’t expect miracles of yourself, you too are human. I see those ever so dainty clay feet poking out from under your pants.  If you need one character trait to deal with being a cancer patient, it is being able to make-do with less than perfect situations, families, therapies, doctors and yes, patient advocates and patients too.

They say talk is cheap.  I beg to differ – if by “talk” we mean an active effort at communication.  It takes two people to have a meaningful dialogue.  It takes a lot more than that to build a vibrant community that works well together.  We have thousands of registered members. Yet, only a few ever bother to log in and read member comments, or post comments themselves.  How can we hear you, if you neither talk nor listen to us talking?  It won’t be perfect symphony of empathetic communication – nothing ever is.  Remember what I just told you?  Don’t expect perfection!  Good enough for government work is good enough to get started.  We will work on perfection tomorrow.  You OK with that?

And while we are waiting for that perfect tomorrow, get out there and try to communicate.  Today. Imperfectly. Humanly.