Dear loyal reader,
It has been months since I last offered you a musing on medicine. Although dormant, I have not been stagnant.
During those months, I have been thinking about my next writing project and here it is. Drum roll, please… “Redefining Medical Futility.”
Although the through lines of At Peace; Choosing a Good Death After a Long Life were about recognizing disease trajectory and avoiding a bad death in the ICU or (my father’s greatest fear) prolonged debility and dependence in a nursing home, my next work will be about refining the moment when an individual patient chooses to decline aggressive treatments and chooses to embrace palliative care and subsequently hospice care.
Medical futility, which I define broadly as ineffective medical treatments that will not achieve a patient’s goals, became a vehemently discussed philosophical concept in the medical community in the late 80s. See article in the NEJM about The Rise and Fall of the Futility Movement. Prompted by ever-increasing patient expectations, accelerating expansion and availability of intensive care units, and technological advances in medicine and surgery, the utilization of advanced life support systems became normalized in previously “hopeless” situations.
National discussions prompted by the tragic circumstances of Karen Ann Quinlan (coma 1975 – death 1985) and Nancy Cruzan (coma 1983 – death 1990) challenged this momentum and prompted those conversations.
Unfortunately, current arguments about futility remain confined to the competing interests of doctors, patients, and institutions treating a tiny subset of patients about whom the majority of observers can agree some degree of “futility” exists. That is, brain dead patients in a permanent vegetative state or slightly less damaged patients permanently trapped in an ICU on mechanical life support.
Doctors argue that they have no obligation to treat where improvement is impossible; patients (or their surrogates) argue they have the right to demand treatment for treatment’s sake; and institutions want to reallocate their resources toward more fruitful endeavors.
In this triptych, medical futility is defined at the expense of a doctor’s autonomy, a patient’s hope (i.e. suffering while waiting for a miracle), or an institution’s limited resources.
Currently, over expectation among patients and family members persists. Influenced by the unrestrained marketing of the U.S. healthcare industry, the majority of Americans are subjected to treatments at the end of their lives that offer little practical benefit.
I want to take physicians’ obligations and institutions’ conflicted interests out of the equation. I want to redefine medical futility on an individual basis – where patients learn about their prognosis and ultimately understand when treatments will not achieve their personal goals – where patients find the optimal point to choose comfort care (quality of life) over aggressive interventions.
By way of example, I offer my below thought piece.
Please Contact Me
To help me with my new book project, I am asking you to contact me if you have a story about how and when you have seen medical treatments become ineffective. The story could be personal or observational.
Alternatively, if you have a story about a patient embracing palliative care and achieving a peaceful death or about a patient beating the odds with aggressive treatment, I want to hear about those too.
Click here to leave me a message via the form on my website. Or email me at sam AT sphmd DOT com. Or hit Reply if you are reading this via email. I will see your comments that way too.
It is good to get back into the saddle. Brace yourself for more postings. I am very much looking forward to your thoughts and to hearing from you.
When Chemotherapy Stops Working: Redefining Medical Futility
Last spring a Brooklyn neighbor, familiar with my interest in end-of-life issues, asked me to discuss advance directives. Vivacious and cheerful, appearing to be in her late fifties, I assumed she wanted to discuss her parents’ circumstances and I happily agreed to meet at the local coffee shop.
On arrival at the coffee shop I was unprepared for her clarification. It turned out that she was 63, had stage III ovarian cancer, had the understanding that she had a life expectancy of three years, and had struggled through the initial surgery and two marginally successful courses of chemotherapy. She was concerned that friends and family would encourage her to undergo too much treatment in the future.
“How do I help them understand that at some point I am going to decline aggressive treatments,” she asked. “I am already suffering nerve damage from the first two courses of chemo and the cancer is still growing.”
We reviewed her boilerplate advance directive, named her sister (a nurse) as her primary health care proxy, determined that she would discuss POLST (Physician Orders for Life Sustaining Treatment) orders with her primary care physician and subsequently review those POLST orders with her oncologist. And discussed how she would consider the establishment of a Do Not Resuscitate status.
How do you know when to stop treatment?
Then we got to the hard part.
After an initial shrinkage, her cancer had grown and spread despite two different chemotherapy programs. Worse still, she was struggling with the re-accumulation of fluid in her abdomen and pelvis (a common occurrence with advanced ovarian cancer, known as malignant ascites) that required periodic and uncomfortable mechanical drainage.
The question: How would she know when it was time to stop aggressive treatments?
I made some vague reference to her personal cost/benefit analysis and tried to sound reassuring that because of the groundwork she was laying, she would be spared the most painful, ineffective treatments. She had, after all, taken the most important step by recognizing a limited overall survival for patients in her circumstances.
But there are still many unknowns in this common circumstance of advanced cancer that continues to grow despite treatments. In terms of macro data, these treatments make little difference in overall survival. In the micro sense, perhaps she would be the exception. Alternatively, in the micro sense, she might have a complication of treatment and her three-year survival estimate might be overly optimistic.
Medical futility is a term that has been hijacked by medical ethicists and philosophers
Isn’t there a better way to determine when treatments are ineffective than to wait until the pain, complications, and side effects of treatment are simply too much to bear? Of course there is and it relates to the physician’s willingness to discuss prognosis. That is because for every advanced cancer there is a point when groups of patients, matched by clinical characteristics, have a similar life expectancy whether they undergo treatment or not [see study in Journal of Palliative Medicine]. And it is a physician’s responsibility to keep abreast of new prognostic data made available through machine learning. Ineffective treatment is the hallmark of medical futility and futile treatments are physically cruel and morally wrong.
Yet most physicians are loathe to discuss prognoses and medical futility is a term that has been hijacked by medical ethicists and philosophers.
In their analyses, the concept of medical futility focuses on the tiny subset of patients who are permanently trapped in the tragic world of a persistent vegetative state, totally dependent on others with whom they cannot relate and frequently dependent on mechanical life support.
Medical futility should be the practical recognition of when treatments are not going to achieve the patient’s goals
But understanding medical futility should be much more than that. Medical futility should not be a philosophical argument about a small group of tragically damaged individuals pitting physician autonomy against patient rights, family hopes, and institutional responsibilities. Medical futility should be the practical recognition of when treatments are not going to achieve the patient’s goals. And my neighbor was struggling to define that point, her goal being to live as long, yet as comfortably and as purposefully, as possible.
The Memorial Sloan Kettering nomogram for ovarian cancer indicates that of 100 sixty-three-year-old women who are nutritionally intact and vigorous when undergoing their initial surgery for stage III ovarian cancer, less than 30 will be alive five years later (the definition of a cancer “cure”) and the rest will have undergone treatments that have ultimately failed before then.
In 2012, an American Society of Clinical Oncology (ASCO) expert panel identified chemotherapy use among patients for whom there was no high-level evidence of clinical value (defined as patients with advanced cancer and poor performance status) as the most widely used, costly, and non-beneficial practice in oncology.
ASCO calls this their Top Five List: Practices or Interventions That Are Costly, Widely Used, and Not Supported by High-Level Clinical Evidence. See also an article from JAMA on Chemotherapy Use, Performance Status, and Quality of Life at the End of Life. This article studied palliative chemotherapy (defined as intended to improve quality of life) and determined that it did not extend life for those with either good or poor performance status but that it dramatically diminished the quality of life of those who started from a good performance status, such as my neighbor.
Combine these points with the multiple articles showing that many breast, lung, and pancreatic cancer patients in hospice care live longer than similar patients attempting to prolong life through chemotherapy and the need to redefine the term medical futility takes on a new urgency.
What could be more futile than treatment that lowers the quality of life while failing to extend it and frequently shortening it?
Understanding these points is difficult but possible. And it is a physician’s duty to keep patients informed, not to keep them in treatment protocols.
My Brooklyn neighbor has many difficult decisions ahead of her. She will be tempted by many recommendations to treat aggressively and then to treat with palliative intent. She should accept those recommendations when she finds comfort that they are shrinking her disease at tolerable expense. However, she should ignore those recommendations when she sees the price she is paying in quality of life is too steep.
Physicians owe it to my acquaintance and friend to be more sensitive to the quandary of quality versus quantity of life. They need to be more cognizant of, and willing to share, data documenting ineffective treatments. And, we all need a revised appreciation for, and understanding of, the concept of medical futility.
Sam…i’ve sent this to a local friend just now having to weigh these options. Thank you.
Also, as you know, my husband was ‘given’ really bad odds of any gains from a double immunotherapy, and yet the doc looked me in the eye and said, “If this were someone I loved, this is what I’d encourage them to do”. HOW DARE HE! We almost immediately decided we’d never see him again.
Nancy, thank you for this. I have sent a reply through FB messaging.
This is a very difficult subject to contemplate when you are lucky enough to be healthy. I guess one should talk to their regular doctor about how they feel about this subject while they are healthy.