Cancer, NPR, and thoughts on health-care in the U.S.

http://www.npr.org/templates/story/story.php?storyId=102638208

The above is a link to an interview I caught on NPR the other day.  Terry Gross, host of the National Public Radio show Fresh Air, was discussing Dr. Robert Martenson’s latest book entitled A Life Worth Living:A Doctor’s Reflections on Illness in a High-Tech Era. Dr. Martenson, a long-time ER physician, is now the Director of the National Institutes of Health’s Office of History and a professor of bioethics and medical history at Harvard Medical School and Tulane University.  His book explores the complexities of end-of-life care in the United States, and the tension between quality of life and the desire to sustain life at all costs.

His opinions floored me, and left me riveted to my radio in a bustling school parking lot in Northwest Indiana, unable to leave my car and begin setting up for the college fair I was supposed to be attending.  I related completely to many of the ethical issues he was raising, and was interested in the complexities and challenges both physicians and patients face in the current American health-care system.   Especially in the care of elderly or terminally-ill patients.

Dr. Martenson’s own mother is 91 and in declining health.  In fact, as a physician he expected her to live no more than a week or two beyond the taping of the interview.  He approached the complexities of her living and dying, then, with the dual perspectives of  both a doctor and the son of an elderly and dying mother.  I would encourage any relative of a terminally ill patient, or patients themselves, to follow the link above to listen to Martenson’s interview yourself. 

For me, I took comfort from the interview–namely the reassurance that my questions and concerns about my mother’s treatment are reasonable and even beneficial.  Martenson points out that the entire paradigm of American healthcare is different than that in many other countries, and is–in many cases–quite flawed.  Especially in our treatment of patients at the end of their lives.  Martensen explained some of the variations:

A couple things are different. I think particularly in hospitals what’s different in American hospitals is that advanced technologies, aggressive interventions, keep getting applied to patients and literally applied right up until the body can no longer respond.   And the default in regulation in the United States, is one must keep doing things unless the patient or the patient’s surrogate tells you in advance not to do things. That applies from infants to the very old, and it means that when one dies in a hospital, unless one has spelled things out in advance and the hospital knows it – there’s often a slippage between indicating it and having the hospital actually know it, the people in the hospital – things keep happening.  Patients are put on ventilators. Cardiopulmonary resuscitations happen. Aggressive interventions with drugs occur. This doesn’t occur much in other countries, both for policy reasons and for just operational reasons.*

 Unfortunately, for many patients and their families, the decisions about how to approach medical treatment at the end of life are not discussed until they are confronted by the immediate need to make them.  The discussions that should take place about such choices do not often occur early–when they are most helpful–but rather play out in the exam rooms and hospital hallways as a loved-one struggles nearby.  

The information gap between physicians and patients complicates the decision-making process, and doctors themselves are not-well compensated for taking the time to sit with patients and discuss options and approaches to treatments.  In fact, for a doctor to spend an hour or two with a newly-diagnosed terminally ill patient–an amount of time Dr. Martensen deems beneficial and even necessary to cover everything–a doctor in New York, for example, is reimbursed only $18 by Medicare.  On the other hand, a doctor who speaks with a patient for 15 minutes, runs a battery of tests and perhaps performs a procedure is compensated handsomely for his or her time. 

This obviously does not create an atmosphere of partnership between patients and physicians, nor does it foster an environment where information can be exchanged between doctor and patient, and vice-versa.  All too often, in fact, it leads to uninformed patients and the American status-quo during end-of-life treatment.

Which, Dr. Martensen argues, is vastly different than the standard of care expected in most other developed countries.  Where in America it is expected that life will be prolonged, whatever the costs, in many European countries, quality of life is still valued over quantity.  Invasive procedures are not de rigor treatment at the end of life.  The use of ventilators, open-heart surgeries, and the like are not standard in the care of patients who are, in fact, dying. 

The latter, it seems, is rarely even discussed with patients or their families.  Though individuals with terminal illnesses and the elderly may in fact be dying, this appears to be a taboo topic that is not often brought up in the conversations between physicians, patients, and their loved-ones.  Instead, increasingly invasive procedures are suggested and decided upon with little regards to anything save the prolonging of “life,” however that may look.  And this sort of treatment can only be avoided by very specific and oft-repeated requests beforehand. 

The prolonging of life seem to be the very bedrock of American healthcare, a paradigm that can be particularly challenging for family members.  Martensen explains:

I think in talking with patients, it’s important to say we have artificial means that can extend your mother’s bodily functions – to somehow get into the conversation that this is artificial and it’s about extending bodily functions the way kidney dialysis can extend kidney function, pacemakers can preserve heart function for a time, versus saying what is usually said, what has been said to me with my mom now – if you talk to a family and say, well, do you want us to continue with life support, do you want us to stop life support? – I think the way people hear that, and I think it’s perfectly normal, is you are saying, do you want to let mom or dad die? Or – more darkly – okay, so you think its okay to kill them. Because that’s how patients hear it.

Which, obviously, is a choice that no loved-one or patient should be confronted with.  And–according to Martensen, is at best a poorly articulated question anyway.  “Life support” and the articifial prolonging of life are two very different things, after all.

The idea that life should be extended “no matter what” creates other challenges, including a very real financial burden.  According to Martensen, over half the money spent by Medicare is spent on a patient’s last six months of life.  A six months, he argues, that are often unpleasant for both the patient and his/her family.  

The obvious financial burden of such an approach aside, prolonging life “no matter what” has costs that extend beyond money.  Again, Martensen told Terry Gross:

People spend their last six, eight weeks, sometimes months, in this agonizing shuttle between hospital, having things done, skilled nursing facility. They get tuned up. As soon as they’re tuned up in the hospital, they’re discharged to skilled nursing, sometimes to home with skilled nurses.

Things deteriorate. They’re back in the hospital. And as you say, yes. One organ system after another is gradually or precipitously failing, and specialists are convened, and specialists work on the organ system, and things keep getting done.

Nobody stands back and says this patient is dying. Nobody says it to the family. Nobody says it to the patient if the patient is responsive. Things just keep getting done.

And the result is that, I think, we who are doing these treatments are causing great suffering. So there are structural problems in the system, and the result is that the patient who doesn’t want any more aggressive treatment, who just wants comfort care, can feel very frustrated.

As the daughter of a terminally-ill breast cancer patient, these are very real and increasingly immediate issues.  That is not to say that they are easy to discuss.  As I have written often, the information gap between my mother’s doctor and our family continues to widen.  He is a very compassionate and able physician, but as time goes on my mother has come to rely more and more exclusively on his recommendations, without stepping back to ask the hard questions.

They are some of the same questions I continue to ask here: 

What are the trade-offs for this sort of treatment?  How effective is it, really, and what are the other options?  What are the dissident opinions about this treatment and why do opponents think the way they do?  What do you think will be the likely progression of this disease, based on your experience with other patients and my response thus far?  What role should palliative care play in the treatment of what is at this current time, a universally terminal disease? 

I have suggested on several occasions that my parents consider seeing a palliative care specialist, whose sole concern is my mother’s comfort at (and leading up to) the end of her life.  An aim that is actually quite different from her oncologist’s goal of prolonging her life as long as possible.  It is, in the end, a crucial distinction.  And one that appears to be sorely lacking in healthcare today. 

My mother’s oncologist has not mentioned a palliative care team, and he is able to write prescriptions for pain pills and narcotics, which leads my parents to believe there is no need (or room) for such a specialist.  But if my mother has readily accepted a controversial chemotherapy regimen (that she previously said she did not want) on her oncologist’s recommendation, how far down this road will we travel?  Obviously she has the final say on her treatment–as she should–but I have begun to wonder if she wouldn’t be well-served by a physician who was trained and ready to discuss the ramifications of a terminal disease.  Who could discuss the controversies and challenges inherant in this course of therapy versus another.  Because there are options.     

A palliative care specialist could ask her about what is most important to her both now and at the end of her life.  Who would fight for her quality of life (however she determines that should look) even when it seems that everyone else is concerned only for its quantity.  Who can discuss medical directives, the actual progression of metastatic breast cancer, and physiological aspects of dying.  Who is concerned soley with compassionate care and comfort at the end of life, and not the incessant whatever-the-costs staving off of death.  Not pleasant topics, but necessary.

I think Martensen would agree.  He told Terry Gross that:

I would like to see – and I’m encouraged because it is starting to happen – is that hospitals and physicians and nurses in them embrace a model of palliative care. And palliative care – it’s for people with a whole range of life-threatening diagnoses, and it’s not about the final two weeks of life or two days of life. It’s about one when learns one has one of these diagnoses, one of these problems, a diagnosis where the disease may shorten life, to start planning from the beginning with the physician, with the physicians a kind of interactive exchange of forming a treatment plan together, so that it isn’t just – we can do this, we can do this, and it’s not fully discussed – that time is used, and this process of consultation between the patient and the patient’s family and the medical team is a regular part of life.

So they are – everybody is – is kept in the loop. It takes time. I would love to see hospitals embrace that, particular the multi-specialty academic medical centers, the kinds of places where I spent most of my medical career. They tend not to do it. The specialists don’t provide coordinated care. Nobody seems in charge. The patient just gets one thing done and then another thing done. The actual discussion happens in short bursts of minutes. Nothing is sustained, and the result is that people feel things are just done to them.

His words seem to describe exactly the situation in which we suddenly find ourselves.  My mother is a patient at one of the multi-speciality academic hospitals to which Martensen refers.  She has an oncologist and radiologists and nurses and surgeons who perform procedures and make recommendations as the need arises.  Though right now her oncologist directs most of the actions and is still “in charge” of my mother’s case, she is still just getting “one thing done after another.” 

Her doctor is fabulous, and does spend time with my mother to discuss treatments, but it is within the context of prolonging her life (a noble and worthwhile goal, obviously).  But the conversation exists almost wholly apart from the fact that this is a terminal illness.  A concept that has hardly been discussed since her initial diagnosis. 

I would love for this time to be used well, for us to be able to discuss with a professional exactly what is happening and what is likely to happen, and what we are prepared to do about it.  About how my mom is going to retain a quality of life that she values, for as long as possible, and how a treatment plan fits into those goals.  Rather than learning as we go how she fits into a treatment plan.

These are difficult conversations, to be sure, but not having them seems to come at a significantly higher cost.  We will be faced with all of these decisions at some point.  That, at least, is virtually guaranteed. 

How prepared we will be when the situation arises, however, is the perhaps the only thing that really is under our control right now.

 

*All information quoted in this post was found in a National Public Radio podcast of Fresh Airentitled “The Ethical Way to Heal American Healthcare,” which aired April 2, 2009.  Terry Gross interviewed Dr. Robert Martensen, author of the new book called ”A Life Worth Living: A Doctors Reflections on Illness in a High-Tech Era”  The whole interview can be found at http://www.npr.org/templates/story/story.php?storyId=102638208

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