Aggressive care at the end of life continues to grow

There are important medical studies, and then there are landmark studies–the kind of science that disrupts the entire medical community. The most recent game-changer was published recently in the Lancet.

Well known surgeon and author, Dr. Atul Gawande and colleagues published this important look-back study on the intensity and variation of surgical care of 1.8 million elderly patients in the US. They put numbers to the well-known and ever-expanding problem of excessive care of those nearing end of life.

The Harvard researchers report that 1 in 3 elderly patients have surgery in the last year of life; nearly 1 in 5 have surgery in their last month, and 1 in 12 in their last week. Not surprisingly, regions with more hospital beds and high total Medicare spending did more surgery on the elderly.

Though politically and emotionally charged, I am here to report from the real world this truth. What gets done to the elderly in the name of “do everything” can be tragic. And sadly, it’s a growing problem.

You simply cannot find a more challenging part of being a doctor than the conundrum of how to apply the fury of modern medicine to the elderly. Nothing is more complex, more emotional, and more human. (Caring for AF pales in comparison to making the right decision for an acutely-ill elderly person.)

Let me tell you two stories:

My grandmother, Nellie, (we called her ‘Non’) lived next door to us growing up. To this day, I, nor my wife Staci, have ever met a kinder, gentler, more loving human. It was as if she was blessed before coming to Earth.

The call came during my cardiac fellowship almost twenty years ago. Non had abruptly developed severe belly pain. It was a terrible pain; I could hear her crying in the background as my Dad reported the news over the phone. And lousy news it was: she had progressive and diffuse blood vessel disease that had acutely obstructed an artery to the bowel. At age 84, with blockages in the heart, brain, kidney and carotids this was a terrible sign. There were only two choices: let Non die with comfort measures or surgery.

In the best case, which was unlikely, surgery would have meant a prolonged ICU stay, an extended and painfully long rehab, indwelling rubber tubes and possibly more surgery. She hated pain, and feared doctors. She was fiercely independent.

My wife Staci and I convinced my grandfather to let her go.

My only regret was that she died before we could say goodbye. For years after, my grandfather felt guilty. We reassured him that it was the right decision. As he got older and sicker, I think he understood the rightness of his choice.

The second story occurred many years ago. I was young then, but could make the same mistake again.

He was still a vigorous 92 year-old man, As a a multi-decade business owner that catered to the young, he had become a beloved figure in his closely-knit community. Like most his age, he lived in equilibrium with a ‘touch’ of heart disease. That was until sustained Ventricular Tachycardia delivered him to the Emergency Room. He was dying in front of our eyes; his family gathered at the bedside, watching him fade slowly away while his heart struggled from the rate of 180 bpm. Simple medicines had failed. He was well when he awoke and fading away in an ER bay in the afternoon.

There were again two choices: let him die, or intervene. Here, things were a little different. I thought; it’s just a shock. A little sedative and a millisecond-length shock. We cardiovert people every day. He’d be fine.

I cannot remember what I said to him, but the gist of it was … “let me try and save you.”  He didn’t want to be on machines or have prolonged life-sustaining care at the end of his life. But he sounded sad about dying that afternoon. It was just one shock, I had thought.

The problem occurred after the shock. His heart stopped. I was prepared to let him go, but the ER staff ran in and started what they do: Chest compressions, tubes and more shocks. I nearly passed out in anguish over making such an error. I went out to tell the family he was likely to die. But then he didn’t die; his heart rhythm came back. But then it stopped again an hour later. And then it came back. He did this for another day or so before dying.

That day still haunts me. I’m not sure what would happen today. It isn’t easy letting someone die in the afternoon, when they woke up well.

These two cases only scratch the surface of the complexity of dealing with acute illness in the elderly. These are crazy-hard concepts:

Futility. You can read the Skeptical Scalpel’s thoughts. He writes about the difficult situation surgeons face with unrealistic families. He’s right.

Expectations of the general public. I’m not sure the public understands the gravity of the situation with excessive care. Until one personally experiences the consequences (let’s call them downsides) of the fury of medicine it’s hard to know. People may fear the loss of a loved one, but they should also fear what medicine can do to their grandparents.

The issue of death. Accepting death simply doesn’t come easy. And it’s not just patients that struggle with mortality; it’s us doctors too. Cardiologists, in particular, frequently view death as failure. It’s how we are trained. Cynics say heart doctors do too many procedures because of greed. That’s hard to deny in some cases, but in most, we just don’t accept death. One more stent, a pacemaker, valve surgery–otherwise the patient could die.

Cost. Most think dollars. That’s true, but I’d also consider the human costs. Things like chronic pain, loss of dignity, and the incredible stress of family members charged with the care of an elderly parent kept alive by procedures. Would any of us in middle-age desire that in our last days? (Of course, knowing when your last days are near isn’t always clear.)

The lack of training and expertise of doctors in discussing end of life. Nobody taught me how to speak with patients and families about end of life issues, or goals of care. I learned myself that stopping life-prolonging care isn’t the same as stopping altogether. I leaned that at the end of life, patients can choose a strategy that emphasizes comfort, dignity and a better quality of what time remains. Do doctors and patients know the benefits of a multidisciplinary palliative care team?

Finally, at this moment, our healthcare system de-incentivizes end of life discussions. It’s so much easier to just do the pacemaker than it is to discuss the notion of a palliative care score. Or that fixing the heart rhythm won’t make a grandmother continent, or lucid or mobile. One hour to emotionally discuss these issues: no compensation—20 minutes to put in the pacemaker, a couple hundred dollars. Those are the facts.

It’s complicated. And a blogger that makes a living moving catheters in the left atrium surely does not have the answer.

Aggressive care at the end of life continues to grow. It’s crucial that we have more conversation and more education. This is why I believe Dr. Gawande’s paper holds such promise. Maybe, just maybe, people will start talking about how best to treat the elderly.

We can, but should we?

John Mandrola is a cardiologist who blogs at Dr John M.

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  • James deMaine

    Excellent comments.  Atul Gawande also wrote an article. “Letting Go” in The New Yorker in which he points out that even near the end there’s nearly always one more treatment that can be tried.  It’s very difficult for families, patients, and doctors to switch from the curative mode to the palliative care mode.  Acceptance of the inevitable is often pushed aside in our high tech culture where we seem to view death as a defeat.  For more discussion please see http://www.endoflifeblog.com

  • http://www.practitionersolutions.com Niamh van Meines

    What a great article. Thank you.

  • Anonymous

    I was in the position of nurse vs daughter. As a nurse, I was pretty sure my mother had some form of cancer (her tumor markers were elevated and her d-dimer was off the scale; since we didn’t find any masses, I think it was a bone marrow cancer), but she was lucid enough (even though she was demonstrating signs of dementia: I’m not sure she knew I was her daughter in the last few weeks of her life) to know what she wanted, which was everything as far as resuscitation goes. And as her daughter, I honored her wishes, even though I knew that a resuscitation effort would be traumatic for all involved.

    The day she died, she finally consented to go to the hospital (she’d been a nursing home because she couldn’t live alone anymore and she was too much responsibility for a live-in caregiver). After speaking with the ED physician, we decided to send her back to the nursing home for hospice care, making her a no code in the hospital. She died a few hours later, peacefully. Even though I’d been expecting the phone call for weeks, it was still a shock to get it.

    • Anonymous

      I am sorry for your loss.  As a hospice nurse I always told the caretakers that no matter how prepared we think we are for a loved ones death, it will still come as a shock when that actually happens.   No one wants to lose someone who matters in our lives.

      • Anonymous

        Thank you. It was a delicate balancing act for me: the nurse side knew that she was dying, the daughter side of me wanted to honor her wishes, even though those weren’t necessarily in her best interests.

  • Anonymous

    Great blog.   As a nurse that has worked with the elderly and specifically with hospice, I heartily agree with concept of being very careful about what agressive care is done with the elderly.  Quality of life should rank ahead of quantity.  The difficult part is helping family members understand that their loved one with dementia is not going to “get better”.

  • http://twitter.com/BoomerHighway Elizabeth A. Havey

    Thanks for this.  My 96 year old mother has severe dementia.  Though the staff where she lives have the best intentions, I think she is suffering.  After a hip fracture in May I had to argue with the surgical team (they insisted she have surgery) to let her go if she coded.  They finally agreed.  She came through to deal with some rehab and now spends her days in a wheel chair.  It’s difficult for me, a nurse AND a daughter, to fight for my mother this way.  Sometimes I feel like I might be responsible for her death.  And where do you draw the  line?  I let her get a flu shot but resisted the pneumonia shot.  That wouldn’t be a terrible way for her to die, do you think?
    .

  • Anonymous

    Well, I think that as a physician you should be at peace. Only God is God and He has something called grace, so you are okay.  Don’t haunt yourself!  You know, whether 92 or 29, the patient may experience a certain delight in hope, even when it turns out to be a pain, if they want hope at the last. Pain is not the worst enemy in life, and a bit more life, even an hour or two, is sometimes worth a bit more pain to some of us.  I’ll bet the man would have no regrets.  I’d say be very listening to your patients.  I got to thinking, as I read your post, that many patients of all ages who die in hospitals probably receive surgery in their last week.  It’s something that you may or may not live more than a week after having.  But many opt for it anyway, and without regrets.  On the other hand, if they don’t want aggressive measures, there’s no wrong in not being aggressive.  I’d say that if pain is a terrible enemy to a person, listen.  That’s justme, I’m not trying to make rules, I’m just thoughtfully commenting, but that’s what I’d want you to do, just listen.     

  • Anonymous

    This summer my 97 year-old father, who has mild dementia, had an infected gall bladder.  Although she mentioned that non-treatment was an option, the doctor’s recommendation was to drain it and was optimistic that he would recover and return to his assisted care facility.  He did make great gains, but ended up in a nursing home.  Two weeks later he was back in the hospital with a urinary infection.  The emergency room doctor was adamant in wanting to treat him even though I wanted to withhold treatment.  Finally I was worn down and agreed to a trial dose.  My father continues to fight an intestinal infection, is in a nursing home, and continues to decline.  I feel that I was let down by the medical establishment in the decision-making process.  

    The lines are so fine!  Oral antibiotics or IV antibiotics?  Food supplements or not?  How hard to push in rehab? Eye care? Dentist?  I hadn’t even thought about the flu and pneumonia shots.  I was prepared for the big questions about CPR and respirators, but not these every day considerations.  It is exhausting.  And when the medical advice is not consistent between physicians or even between consecutive sentences from the same physician, it leads me as a caregiver to have endless doubts and anxiety.  

    I’m so glad to see this forum open up.  And hope that our society as a whole will grapple with these issues so that future generations will have better information and guidance.

    • http://www.practitionersolutions.com Niamh van Meines

      That’s a good point. To be prepared for CPR & respirators but not for day to day decisions. I think practitioners are well meaning and talk very eloquently and with great conviction about the unknown future. The standard of care guides them in recommending treatment, but the reality is that knowing the right decision is very difficult. The wonderful Dr. Russell Portenoy at Beth Israel, NY has taught me many things, but the most useful in trying to decide if the treatment being offered is the right thing to do are as follows: 1. What evidence is available that this treatment is the right one for someone like your father? 2. What is the burden to him if this treatment is done? 3. How effective is this treatment? 4. Would he want to have this treatment? The answers help to frame the decision.

      • http://www.facebook.com/profile.php?id=1014499897 Nancy Allen

        Thank you for the good advice.

  • http://pulse.yahoo.com/_JIPXZV6FL4LOKECVKLWZ6DP5CU Gaby

    Thanks for this blog. My experience with my 93 year old father has a similar sequence. He had a massive stroke and was in the hospital. He acquired pneumonia and was pretty much out of it. He was on light morphine and could not eat. His physician said we could have a feeding tube inserted for nutrition and my mother, 2 sisters and brother considered it. Thankfully, the gastroenterologist gently said he would refuse to do it since in his opinion my father was dying. After he consulted with the family, I was able to ask my family ‘why dont we let him go?’, ultimately my siblings left it up to my mother and she, knowing that my father had always insisted that he did not want to be connected to machines or be put in a nursing home, agreed to let him go. 5 hours later he passed peacefully. I always think of that Gastroenterologist who was honest and gentle with his assessment.

  • http://twitter.com/BoomerHighway Elizabeth A. Havey

    TO 46er, The day to day decisions!  Like dental care. It is difficult and exhausting when they come up.  Because I keep thinking my mother won’t be here in six months, a year.  I am on a roller-coaster of decision making.  One thing that has come out of my experience is wishing my mother had 1.known more about medicine; 2. written out an Advanced Directive so that making some of these decisions would be easier for me.  With her dementia she cannot respond.  And yet she seems to want to fight.  It’s very difficult.  And sometimes I think the senior center just wants to keep her alive.  After all, they are making good money while she is there.  

  • Anonymous

    Thank you for standing up.

    As a hospital, hospice and nursing home volunteer for almost 30 years, and the daughter of a mother who died in one after being a hospice patient three times, I have become a vocal supporter for giving comfort and dignity to our elderly, loving them to death and not subjecting them to knives and tubes when they reach the natural end of life.
    We must understand and accept that the most natural behavior before dying is stopping eating.  The Harvard study showed that the MOST performed surgery in the last month of life, and the third most performed in the 11 preceding it, was a gastrointestinal feeding tube.  

    The 4th most performed in the last month–and the last year–was the left heart cardiac catheterization.  The others in the top five in the last year of life were upper and lower endoscopies and colonoscopies.  What is the message here?

    Read Dennis McCullough’s beautiful book advising Slow Medicine for the elderly, “Your Mother, My Mother.”  It is time we look at our frail elderly and instead of giving them more pills and surgeries, we ask them while they can tell us, where they want to die and who they want to be with them.  Then let’s support our old treasures–and their loved ones–through their final year of life with honest medical information, abundant spiritual care, total physical comfort, and dignity.  

    One key to making this happen is advance care planning.  We must empower patients to make these decisions and not burden families to make a decision to accept or refuse tube feeding–to prolong suffering or allow death. 

    Health care providers cannot become comfortable with these discussions if we are not talking about our own deaths, about our own decisions for care at the end.  This is how we will build true compassion and care for those of us whose time to live reaches its expiration date.  One day I will die.  I don’t know when or how, but I do know I want to die at home, with family.  My doctors will have to help me make that happen.

  • http://twitter.com/BoomerHighway Elizabeth A. Havey

    Loretta, thanks for these words of wisdom, strength and kindness.  I cannot tell you how many times I have felt guilty about having to make a decision for my dearest mother and hoping it is the right one.  She was of a generation that asked for a pill when they went to the doctor, took the pill and that was that.  I love her and only want peace and tranquility in her last days–not loneliness, fear and confusion–which I know she has to be experiencing as her dementia gets worse.  Thank you for hospice too.  

  • Cindy M.

    Dear Dr Mandrola, while there are many physicians who are good, however
    there is One GREAT PHYSICIAN. God is the only One who determines our
    tomorrows. I am thankful for that, I do not trust my life, that of my
    family to any government agency as you will see below. Thank you for
    caring enough about our Elderly/disabled/Chronically ill so as to not
    wish to subject them to needless, painful procedures/surgeries. As a
    “coworker” in health care for several years I sincerely believe that as
    medical consumers become more truly informed are about health care
    matters they will be able to make wise choices for loved ones placed in
    their care and ultimately themselves. I would advise that the matter of
    “cost” be handled gently and not such a great deciding factor in these
    decisions, because it should never be “too expensive to care for (fill
    in the blank: your mother? my mother? a child?) so that we just let them
    die.” The precedent here is Hitler’s Third Reich…and the efficacy
    with which it became “cost effective” to “dispose of” those deemed “too
    expensive” to care for. (I realize this was not your intent..however it
    is prudent to tread carefully just the same, and definitely to not
    relinquish these issues to government control) So, back to my first
    sentence.

  • http://profiles.google.com/molly.ciliberti Molly Ciliberti

    Your post is precisely why I won’t call 911 if I have a heart attack or stroke when I am older. Let me die in peace in my own house. I don’t want the shocks, the IV’s, the machines, the dehumanizing of me, the pain and the financial burden on my family, let alone the emotional drain. When I am old and dying, maybe it’s my time to go. I worked for 20 years in critical care and swore that I would not die there. Life is finite and that is what makes it so precious. No god, no heaven, no hell, just death which is actually part of the cycle of life.

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