When do you move from living to dying?

Nov 03 2010 Published by under Medical Musings, Medicine

As physicians, we're pretty good at diagnosis. This hasn't always been the case. Diagnosis takes not only excellent clinical skills, but a thorough knowledge of the causes and manifestations of human disease, good diagnostic equipment, and an understanding of what these skills and tools can and cannot tell you. But while our diagnostic skills have improved, prognosis has often eluded us.

And yet, what could be more important that prognosis? What could be more important than knowing the probable course of your illness, and how long it may take to kill or maim you? As I sit typing, comfortable in my office chair, physically limited only by my own lack of exercise and poor eating habits, someone is laying in a hospital bed hurting and afraid. He is at a very uncertain time in his young life, and no one can tell him with any certainty what will come next or when.  He needs to know his prognosis.

For reasons obvious and otherwise, age affects our approach to treatment. There are probably value judgments involved, but from a practical standpoint, there are things a young body can tolerate that would kill someone older. Prognosis may often elude us, but we know that, in general, an 80 year old is closer to death than a 40 year old. In general. And in general, a 40 year old may be able and willing to tolerate treatments that would kill an older patient.

Knowing the likely course of an illness (not its natural history, but its real-world course when treated) is important not only for ordering one's affairs but for planning further treatment. If an elderly man breaks a hip, we have to weigh very practical considerations---hip fractures often lead to death due to the complications of immobility, but in some patients, the surgery can be very risky. In a young patient with cancer, there is often more room to be aggressive, but how do we know when to advise someone to stop?  When do we tell a patient, "the disease is winning, we can't stop it, but we can treat the symptoms?"

Sometimes, after a crappy diagnosis, a patient may sign on with hospice and go gently, comfortably, and surrounded by family.  Sometimes they feel a need to "fight", however they may understand that word.  But if we are going to help someone fight a dismal prognosis, we'd better be prepared to tell them exactly what that may entail.  For example, if I diagnose a young man with widely metastatic colon cancer, one that appears to be hopelessly* advanced, I know that the oncologist will offer them chemotherapy.  Depending on the clinical situation, it may be that chemotherapy could extend his life for several months.  The patient must be given a choice (but often isn't): should he focus on symptom management in his last weeks-to-months, or should he focus on extending his life?  These two goals are often mutually incompatible.   It is my belief---one with out the support of empiric data---that patients are not often given enough information to make this choice.  They are not told that the price of extending life by a few months may be horrible pain, a pain that makes them choose between being completely snowed by narcotics or being in agony.  They may not be told that blockages in the colon may cause them to vomit their own feces, and that they may need surgery so that the colon drains through a hole or a tube rather than through their mouth.  They may not be told that infections, pain, and delirium may keep them in the hospital and prevent them from having any meaningful interaction with their family.

I don't mean this post to be hopeless, to imply that a terrible diagnosis leaves a person with a binary choice between suffering and death.  But we physicians must be willing to tell patients the entire truth, and patients must be willing to understand that truth is not meant to destroy hope, but that hope built on a lie isn't hope at all.

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*Hope is a tricky concept.  There is always hope, but as doctors we must temper hope with realism, and tell patients which goals they can "hope" to achieve.  These goals may be control of symptoms rather than control of disease.

14 responses so far

  • Jane says:

    Interesting post. I imagine the patients relationship with their family and the family's willingness to accept the prognosis also has a huge impact on what course the patient ultimately decides to take as well. So it's probably also prudent to make sure that it's not just the patient who is told the absolute truth but their family members too, so that they don't unwittingly prolong the suffering of the patient by wanting to keep them around for longer.

  • Dianne says:

    There's a lot of substance in this post and I agree with most of it, but I'm going to focus on something I don't entirely agree with. I think the goals of symptom management and extending life are-or can be-even less incompatible than you describe.

    Chemotherapy can improve the quality of life in patients. Anecdotally, patients with (initially) chemosensitive tumors often say they feel better after receiving chemo. I also remember seeing an article suggesting that palliative chemotherapy in a variety of tumors extends life and improves quality of life, but can't find it at the moment. It was from the early 1990s, meaning that the effect was present already with fairly primitive chemo. (Assuming I'm correct...I'll try to find it and apologize for my lack of proper sourcing.)

    Conversely, early entry into hospice/palliative care can actually improve survival, at least in patients with stage IV NSCLC. Reference. So, yes, there's definitely a time to say that treating the underlying disease just isn't working and that any further attempts are not worth the loss of time and side effects. But I think it is only rarely at the moment of diagnosis, even in cancers that are "hopeless" (ie incurable.)

  • Dianne says:

    Sorry, my attempt to link to to a reference above failed. One more try: Reference

    In case that fails, the reference is NEJM Temel et al,2010; 363:733-742

  • physioprof says:

    Diagnosis takes not only excellent clinical skills, but a thorough knowledge of the causes and manifestations of human disease, good diagnostic equipment, and an understanding of what these skills and tools can and cannot tell you.

    Dude, it also takes deep understanding of PHYSIOMOTHERFUCKENOLOGY!!!!!!!!!!!!!!!!!!!

  • daedalus2u says:

    I think when 100% of your energy and attention is focused on fighting the disease and the disease is winning, then it is time to divert some of that energy and attention into dealing with end of life issues with self, friends and family even if it accelerates the end.

  • Zuska says:

    More frank talk like this is what patients and families need.

    Last time I was in for my annual mammogram I mentioned to the tech how much my mother hated them, and how difficult it was for her to undergo them. She asked me how old my mom was, and I told her. Then she told me that while mammos have to be offered to all women and no one would refuse one to a woman who wanted one, she herself was going to be "done with all that" after age 75. She asked, realistically, if a >80 y. o. woman is diagnosed with breast cancer, is it reasonable to think of putting her through intensive chemotherapy?

    Well, maybe, I don't know. Some 80 y. o.'s are very active and healthy, some less so. Some will feel one way about wanting to "fight", some another way. But I think it is worth having that conversation about the annual mammos and the possibilities ahead of time anyway...it ties into end of life planning such as for a living will, which some people may have already done, but which seems more abstract. People are usually thinking of an "unplug the life support machine" scenario with regard to living wills and the decision to not want "extreme measures". They rarely think about "extreme measures" in the sense that you are describing in this post, but I feel it sort of falls under that category. If I'm 85 and I get cancer, do I just want to have hospice and palliative care?

    Then there's always the case where you make that decision in advance and might feel completely differently if and when the situation presents itself. I don't know. But if you don't ever talk about it beforehand it's kinda late to start the conversation when you are already in the midst of the emotional and physical nightmare of the disease itself.

  • WMDKitty says:

    I think that the patient needs to know all available options, the risks and benefits of each, and a good week to ten days to weigh the options. Then, the patient should decide, in consultation with her doctor(s), which way to treat the disease, if at all.

    Honestly, if I'm terminal, I just want to go to sleep, and never wake up. Don't keep me hanging around on life support in some vain "hope" of a miracle -- let me go on my terms, then go and party hard in my memory.

  • Dianne says:

    Slightly tangential to the topic, this is another area where "alternative medicine" can do harm by giving people false expectations. Most obviously, the claims that any cancer can be cured with alternative treatment X lead people to waste their limited time and money on anything from peach pits to coffee enemas. More subtly, the constant claims that the "medical establishment" is hiding "the cure" to make more money leads people to believe that their doctors are deliberately withholding life saving treatment. This leads to obvious problems of distrust and misunderstanding.

    Occasionally, patients' families will plead their cases as though trying to convince me that they're "worthy" of treatment. "He's only 18," "She never smoked," "He's worked all his life" etc. That's all no doubt true, but it's completely irrelevant when talking about a person with metastatic renal cell carcinoma and a performance status of 20% or metastatic pancreatic cancer and a weight of 40 kg or one of the nastier sarcomas that simply don't respond to chemotherapy. I'd love to be able to treat them, along with any 90 year old chain smoking welfare queens with similar conditions out there but I don't know how. And neither does anyone else. There are no cures-and really, no treatments-for these conditions. No matter what snake oil the alties are selling these days.

  • Galwayskeptic says:

    Great post, Pal.

  • E. Carpenter says:

    Excellent post. I avoid doctors who are not honest about treatments and outcomes, and I'm explicit about wanting to know the bad stuff as well as the hopeful stuff.

    I've had too many friends and relatives put through horrific medical nightmares before they died - and some of those unnecessary nightmares lasted several years. I'd rather die a few months, or even a few years, sooner, and enjoy the end of my life in whatever ways I can.

    I see no point in living on and on as a frightened, screaming demented person strapped into a chair, or slowly wasting away while tortured by oncologists who think that unending nausea, hallucinations and distorted senses are a good trade off for slowing the growth rate of a metastasizing cancer that they know will be fatal. Doctors can't be trusted with end-of-life decisions.

  • Khawar says:

    Excellent Post and Great Comments. Each one is full of wisdom. Please keep them coming.....

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