How much for a month?

Recently I met the husband of a patient with a diagnosis of advanced lung cancer. Even though she was young and had been healthy, the disease spread to her bones.  I outlined treatment for this incurable illness; choices, goals and side effects. This was a very tough meeting, because by the end we had to discuss time as measured by dollars.

The particular challenge was that this family had health insurance with a large co-pay.  This meant that they would pay 25% of any medical bill. In addition, his wife had been the major breadwinner, their children were still in school, and the couple had limited financial resources.  Any therapy, which his wife received, would likely have a direct effect on the lives of the family, perhaps for years to come.

No matter what we did, she would die. Treatment would be palliative, designed to improve quality of life and perhaps extend her survival for weeks or a couple months. The best therapeutic alternatives included “active” medications, which would easily cost tens of thousands of dollars, even for a single added month of life.

This loving husband, to both his wife and children, tried to calculate how much money to spend on the possibility that his wife might live, with cancer, for a short time longer.  What would be the quality of that life?  How would spending all their savings, going deeply into debt to buy a few weeks, affect the lives of the children.  Was it worth the cost?

He did not know what his wife desired.  He had not spoken with her about this terrible dilemma.  He found it incredibly hard to put her in the position of deciding whether to stop or limit therapy, and thus give her children a better life after she was gone, or to fight the disease, and try to give her children more time with her now.  Add to this the dilemma that she might also be determining how long she would live, and he found himself unable to add that much pain to her heart. How many of us could hurt someone we love with such a burden?

After a long discussion, I convinced him that as much as he loved her and wanted to protect her, that it had to be his wife’s decision.  I reassured him that when the three of us met, I would be gentle and patient, and would not corner her into a place of desperation.  We would move step by step, maybe even treatment by treatment, to protect her, him, the children and, incredibly, their bank account.

In the kind of event, which happen so often in oncology as to make one wonder about a divine hand, we never had that meeting.  Before we could act the cancer spread to the base of her brain and she was admitted seizing and septic.  As per her prior wishes, she was not placed on a machine and died within days.

We live in a cruel time when the price, human and financial, colludes to crush patients.  Though more than a third of families will spend their last dime on medical care, we continue to develop and support therapies that often have marginal benefit, at massive cost.  In a Kafkaesque twist, it is not clear that spending great amounts improves life’s length or quality.  Money driven care punishes the rich, while the pain of illness and the guilt of too little punish the poor.  The disease from which we suffer is not just of the body, but of the medical system itself.

28 Comments

  • Thanks for another insightful post. This is why we in England are so proud and grateful for our fabulous National Health System. Yesterday for example my 93 year old father was found to have a problem with his faltering heart..by that evening he was admitted to hospital and on Tuesday will have a pace maker fitted..all for no cost to us as individuals. Yes over the working years of one's life we all contribute a small amount per capita but it is negligible. Why there was such an outcry at trying to introduce something similar in USA I will never understand. The very best bit of England is the NHS..we all love it! Long may it exist.
    • James Salwitz, MD
      Americans tolerate a broad gap between the have and have nots in the name of individual freedom and the American dream, whether it is money, homes,education, food, safety or healthcare. It can indeed bogle the mind. jcs
      • Seems to me a healthy number of the American people continue to rebel against rather than tolerate the broad gap between what is fair and just in all those aspects of living in America that you mention. Unfortunately prevailing against political corruption, gridlock and greed has and is in most cases proving to be an insurmountable task in many areas of concern. God forbid we ever become tolerant to the point of widespread apathy and surrender.
  • I couldn't help but think exactly what red pear puppets said, too - except in my case, it's the Canadian health care system I'm so grateful for. I've heard countless horror stories from my fellow heart patients in the U.S. about enduring medical bankruptcies (almost 1 million a year!), collection agencies at the door, losing their homes or their businesses, not being able to see the doctor or refill a prescription for cardiac meds because there was just no more money. That the wealthiest country in the world would be allowing this reality is indeed a disease of your medical system itself. What you write about is not just an end-of-life care tragedy in oncology, it's equally horrific for too many U.S. families facing chronic, progressive diagnoses like mine, too.
    • James Salwitz, MD
      Absolutely. All motivated by a paranoia of "rationing," when we ration healthcare, in an imbalanced, unfair, antiquality and detrimental way, every day. jcs
  • Bette Holmboe
    I am someone who chose not to have treatment your article reinforces my decision! I chose quality over quanity!
    • James Salwitz, MD
      A very hard decision, I am sure. You certainly have my respect and support. Hang in there, jcs
  • Think it is time to leave the USA.
    • There is a German word 'schadenfreude', that the financially advantaged, regardless of how or where they get their money, exemplify. I am sure to file for divorce as well and disown my children....just in case. At no time, given the relationships in some so called 'marriages,' should the doctor discuss things with the spouse first. If she was the breadwinner, primary, I always wonder about these thongs. Being an old Indian woman who resolves her financial and political issues first, and goes into the fields..a better solution. Where is all that charity care? Where are all the funds from fundraisers? Mostly to the advantaged as well. Regardless of mental health it seems.
      • American Indian....
    • James Salwitz, MD
      Will try to fix ... but I worry sometimes. jcs
  • How about this scenario. A woman is having symptoms....sees multiple physicians..over many months..but still no clear diagnosis. Her best friend, living with her..is a physician. Knowing the financial and medical costs..in many situations from experiences. They cannot get along..move into separate living quarters. Suddenly..when she has about 6 months, she finds out she has incurable brain cancer/tumor. The legal aspects of the shared estate....
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  • A surgeon friend working in Vermont sent me this..looks interesting http://www.patientphysiciancoop.com/ Patient/Physician Cooperatives (PPC), established in 2005, is a non-profit organization of patients, physicians and member representatives. PPC is not an insurance product or discount program; it is a group of physicians who have joined together to give their patients access to affordable, basic health care through mutual support.
  • IBS
    How come victims in other countries: England, Germany and Canada have no problems with their payment plans? Anyone ever feel it's best to move when an adult gets cancer? Does our Country just have too many people to take care of them all with the cost of medical expenses? What about if the IRS gives the drug companies BIG discounts to help save a life? For such a young family, to be struck not only with an inurable illness, but then having to repay thousands of dollars.....is insane. It can kill an entire family. Just like college students get grants and so do researchers....there has to be something for a family too. For children, there are Danny Thomas' hospitals. There must be something that I don't understand. Are the cancer drugs in other countries the same qualities as ours? Or do the drug companies only give to cancers that can be cured completely....but not Lung Cancer? How much does it cost to keep a serial killer alive or a pedafile in a prison? They die by a shot of morphine? Wouldn't it more advantous just to electcute them without using drugs? Oh, I forgot....they're private. Money always comes in play. Good people must suffer and the bad people Live the Life of Riley. I'm sorry I get carried away. This is a subject I'm VERY passionate about.
    • James Salwitz, MD
      You are indeed passionate about this subject. The unfairness of it, especially in a land of such plenty, is hard to excuse. I suspect that your idea of discounting drug companies who produce cures, contains the kernal of an idea ... i.e. pay pharma (or doctors) more, for results, not just volume. jcs
    • You go passionate IBS! Hard to believe but true drug costs in America have no cost controls in place! And why can the same drug be bought for much less in other countries? Because we are in effect subsidizing these drugs sold in other countries since the drug manufacturer is making a killing on us. You could die here in the land of the free because the cost of a unique drug to treat your cancer is so high you can't buy it, and you don't have health insurance that will cover the cost? Oh well, maybe you can get in on a clinical trial where the drug company will pay for the drug that may save your life, thereafter allowing them to sock it to those coming after you in need of having their life saved. Yes, IBS, "money always comes into play". How about before the IRS gives out BIG discounts to drug manufacturers the FDA must first control the drug's cost at the same time they approve a new drug and also any future cost increase of said drug? Or we could just let the American Dream continue to die along with the unfortunate victims of its corruption.
      • In uk its the infrastructure that is no cost to the individual as well as the treatment itself...everyone is covered..and cared for. As far as I know drugs arenot subsidised by any-one. A proud dream made reality by a visionary. It is terrible to think that you have no choice if you don't have money. I had assumed your system of insurance made it all possible...seems I was wrong. Vote to change perhaps?
  • Yvonne A.
    I have been looking at Veria.com this is the website that produces the stories about people that have been helped by natural causes. It is called The Incurables. It is so worth your while to look at it.
    • James Salwitz, MD
      Thanks very much for the lead. jcs
  • Liz
    And of course if you fall behind on payments many practices will cut you off from medical care.
    • James Salwitz, MD
      If they do, you should report them to the State Board. At very least they are absolutely required to arrange alternative care. jcs
      • The doctor who cut you off may be on the state board..and..if you are having terror, anxiety...oh I am sure you can sit down and write an intelligent complaint....BS
      • Imaginary world sir...
  • Liz
    My aunt, who died of ovarian cancer last fall, made the choice to stop treatment last summer partly due to quality of life issues and partly because she was going to run out of money and didn't want to die living in poverty and only having the choices that poverty brings you. We had a long conversation about that last summer.
    • James Salwitz, MD
      Very tough decision. I am glad you were able to talk to her about it. jcs
  • [...] this post! It describes the dilemma posed by the treatment of a young mother with lung cancer patient. She is [...]