The second opinion DNR

I drank the Kool-Aid, a long time ago.  The end-of-life is a part of life, hospice sometimes offers more than chemo, be honest with your patients about prognosis and cure, say “death” instead of “we lost em,” Kool-Aid.   I have taught this subject at the medical school for 20 years.  However, the truth remains, that no matter my belief or intentions, sometimes I do not get it “right.”

Recently, a 42-year old patient of mine was admitted to the hospital. He had advanced and advancing cancer, having dramatically failed initial therapy. Absolutely incurable.  Nonetheless, I rushed forward with aggressive therapy.  Tests, surgical intervention, poly-pharmacy, and statements like “Well, if we can get him stable, just a little stronger, he may respond to different chemotherapy.”

Why had I strayed into the land of onco-waste?  Misplaced sympathy. This man’s life had been so full of tragedy and pain that in my heart I felt he deserved a break, deserved hope and deserved the opportunity to live.  Noble thoughts perhaps, but not for an oncologist, because what I was about to create was not mercy, but prolonged suffering.

Then, along came Tuesday morning, which for me means a string of meetings. Rounds on this gentleman fell to one of my associates of many years.  My partner listened to my sign-out, read the chart, examined the patient and then, in the supportive way that doctors who have been through many trials together communicate, he called me up and said, “Jim, are you out of you mind?”

With fresh eyes and heart, my partner was able to have a positive and supportive meeting, which was met with sad relief and grateful acceptance.  The patient’s treatment course was changed to comfort care.  He was made DNR.  Three days later, not in pain, not short of breath, not frightened, family at bedside, he died.

The important insight is that no matter how motivated a physician may be to offer balanced treatment with a palliative touch, sometimes, if you care, you will be too close.  Thus, in order to offer quality end-of-life support a doctor must design his practice to be open to the input of others.  This means listening to partners, nurses, families, or even front desk staff.  There may be a need to get palliative care specialists involved early, even during active therapy, if for nothing more than to offer perspective.  Whatever approach the doctor takes, it is vital to keep an open mind and work together to design therapy.  End-of-life care is a team sport.

Inside every doctor’s head are angels in conflict.  One says treat and battle the disease, there is so much more we can do, life is precious.  Another says never forget each patient as a miraculous individual who loves and suffers.  And another knows that all life ends, and thus the doctor must offer comfort, instead of false hope, which yields futility.  The best physicians will work to find balance, not only in their own minds, but in their relationship with members of the medical team and the world around them.

21 Comments

  • A most loving and sensitive post ..long may you teach young doctors to be open to the voices..and tears of angels xx
    • James Salwitz, MD
      Thank you very much, jcs
  • Your thoughts and conflicts during your treatment of this patient is heartfelt and very moving. I was in the fabric department of a local store and was waiting in line when I became party to a conversation between a woman (her medical rank I do not know) and the salesperson. She was stressing how her work in hospice care has always been to focus on the living family members and friends and caregivers. The patient dying is not their focus. I felt a huge hole growing in my stomach. I said that I think I would rather be an old Indian woman out on the prairie!
    • James Salwitz, MD
      I agree ... something missing, jcs
      • D Someya Reed
        I’ve heard the absurd comment that hospice is about life and the focus is on the family because hospice is responsible for the family’s “care” throughout the illness and for up to 13 months after death. Dame Cicely Saunders (credited as founder of the modern hospice movement and first hospice) said with regards to her hospice, “You matter because you are you, and you matter to the last moment of your life. We will do all we can to help you, not only to die peacefully but to live until you die.” This was in the forward she wrote to the first edition of the Oxford Textbook of Palliative Nursing (although probably said sooner) and an excellent work I might add. It’s still in the forward of the current third edition which I own. Now if I were counting, it’s a tie between the focus being on life and death…two “life” (one life, one live) and two “die.” The concept of her quote has been altered to make it more palatable to the general public and, therefore, more acceptable and marketable. Will we be taking the “death” out of “death and taxes?” Should we replace it with “end-of-life” (and taxes)? Should we no longer say that “one day we all will die” and replace it with “one day we all will see an end to our lives?” We’ve already largely replaced “death and dying” with “terminal” and “end-of-life.” Should we use these to re-title Elisabeth Kubler-Ross’ book, ‘On Death and Dying?’ Does rewording actually alter anything about reality? Our penchant for changing wording to make it less upsetting sets up skewed perceptions and expectations both for the service providers as well as the recipients. Is it any wonder that an otherwise intelligent person working in hospice would think that their focus should be on life and likely those who will live on (the family) as opposed to the reason they all are there…the dying patient. They may not be so cold as to say the patient is less important (because he’s dying…aka, approaching end-of-life) but believe me, if that’s their focus, that patient knows it. Has anyone stopped to consider the actual effect the statement “hospice is not about death, it’s about life” has on a dying person who doesn’t have much life left? No hospice can guarantee quality of life remaining and the patient has already given up any chance of medically induced “quantity” of life to be there. The hospice can only do their best with what they have to work with (the patient’s condition). And, of course, if that same dying person refuses to accept the imminence of his death then he will be besieged by those whose singular goal is to “cure him” of his denial. I’ve yet to understand that as a necessity. Just as in anything else, hospice can be a great thing or a worst nightmare. It all depends on who you get and how much you know or are willing to learn. My comments were inspired by not only Jill’s comment here but also, and particularly, by your exchange with Mary (7-19 & 7-20) in the post “Too Angry to Die.”
        • There are so many questions that come up about death and dying. Current trends and attitudes toward a kind of what I call a smiley good karma response. For me as an individual...I think at a certain point when I was involved with medical students and relatives who were already medical professionals that I discovered, alas..I was always given that smiley..good karma face but because I was not a medical professional..and not a doctor..somehow I was ..not credible...I was dumb...mentally ill...not interesting...you name it. Maybe it was because my Mom and Dad were not medical professionals. When another patient going through radiation therapy asked me if I had any children (she was 38, had two young boys..oldest 7) (I was 40..just married for 5 years..just miscarried)...I said "No. I do not have any children." She said "You are so Lucky". It is interesting how perspectives on living and dying and the value of life on an individual basis is relative and the perspective changes constantly.
    • Liz
      As someone who will die of my cancer unless I am hit by a bus, my first thought was "What am I? Chopped liver?" If the patient wasn't dying the family wouldn't also be "clients". By what twisted logic are family the clients and not also the person dying? Geesh. She doesn't belong working with the dying. She is negligent and not doing part of her job. Of course the medical profession, just like any other profession, is not exempt from a$$holes working in it. I have run into more than a few over the last 10 years of my various cancer gigs - at top NIH comprehensive cancer centers, local university medical centers and community docs. My tolerance for a-hole behavior from the medical profession varies with my stress levels and how sick I am at the time. I have learned the hard way it is risky business to call someone on their inappropriate behavior if you want to keep a provider (because often firing a provider gets you fired from an entire system) and you are better off shutting up, putting up even if it what you are on the receiving end of isn't right, fair or ethical...Sigh. The power imbalance is pretty dramatic and the patient is not the one with the power. Yeah you can vote with your feet, but only in a limited way since in many practices, fire one doctor and you are ousted from the entire practice. In a huge city this won't matter much because there are lots of choices but in smaller towns this becomes a big issue.
      • Liz
        PS meant to also say with the trend towards giant, multiple specialty practices (the town I live in 99% of the docs are in one of three of them, of which one is out of network) it becomes even more dangerous to switch doctors or fire them. The better part of prudence is to shut up and put up if you want to even have a doc/onc because of the oligopoly, and sometimes monopoly power of these giant medical practices.
        • Should not be that way.....I am not shutting up..or putting up..anymore..I can use my arts skills to speak out in a socially viable and acceptable way. By the way..when the orthopedic specialist who prescribed an epidural injection for my neck told me to go the ER..it sounded like I was having a stroke..my son called ...the doctor took him out of the room..he ran away and called the doctor an a$$hole and came back into the room and would not let go of me....not ok but better than the F word..
        • I had to look up oligopoly...my son knew what it meant...:) I purchased a copy of the Magazine "Quilting Arts" yesterday, some surface design issues were presented. I am not a quilter per se, my Mom is. Lo and behold a fellow graduate, also has a masters in Art theraphy..credentials I contemplated earlier on. She was diagnosed with OV cancer three years ago. Neon imagery, Rutgers MGSA offers courses in Neon..her translation to fabric quit electrifying! Her story is a moving one......I read about the hiring and firing of doctors...kind of medieval...
      • Thank you! You validated some of my experiences! I hate that you went through these things. One woman I met during radiation treatment had ovarian cancer , 38, two young children..had a problem with the doctor during the delivery of her oldest child who was 7, when I met her. Because of it she never went back for regular gyno. checks. I was always affronted by the "my cancer is worse than yours and I am so special" attitudes of some patients..this woman brought me back to a changing room where a beautiful African american woman hid during her treatment ..28-29, with advanced stage colon cancer. We said hello and acknowledged her. Battling with both medical professional and patients..complicates the process. When I approached a lawyer...my guess is they probably lunch with the doctors and wives..I felt really uncomfortable! How about this one..I went to see a radiolgy/oncologist...brought up a discussion about a behavior directed at me by a nurse..he made light of it..told me to tell the nurse 'F--- Y--. When I criticized for using or suggesting I say that (my 8 year old son was outside the door in a chair waiting) he asked me if I lived in the boonies...I am a Jersey girl ..no boonies in New Jersey was my response! Thank you again!
  • Your patients are fortunate to have angels going to battle for them. It is a Holy war being waged, your mission of compassionate, caring end-of-life decision making. May the angelic clarity, delivered by the angels in your head, continue to assist you on behalf of those entrusted to your care for many years to come.
    • James Salwitz, MD
      Thank you very much, jcs
      • The image and symbol and definition of angels is one I have studied and fabricated in my art studies/projects. Always is a little curios to me in scientific matters. On the humorous side..there is a nearby hospital with an entrance where there are multiple size crucifix's. Some of the oncologists..very tall, slender, dark, meticulously groomed, sleek....conjure up another kind of image. When I was wheeled on a gurney into the OR for my second breast surgery and dissection I had to move myself over to this narrow hard , cold metal table, lay down, stretch out my arms to be strapped down, pain immediately... another image was conjured..very scary feelings....
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  • www.emotionalfitnesstraining.com
    Pinned this on my Aging Ain't For Sissies Board. http://pinterest.com/pin/147141112798593596/ Thank you.
    • James Salwitz, MD
      Thanks very much for posting it. jcs
  • Marcelo Ceron MD - Oncologist
    Your blog reflects our feelings in a beautiful form ...same emotions and conflicts here in Brazilian oncology Greetings
    • James Salwitz, MD
      Great to hear from you. Cancer and its devastation are indeed universal, and the massive impact on mankind, all over the globe, may be difficult for us to comprehend. Thanks for reading, Your thoughts or comments are always welcome. jcs
  • Angela
    This is written in response to the Hospice worker who seem to think that they were present more for the family than the patient. I have dealt with Hospice twice in the past 12 yrs. My Grandfather died almost 12 years ago(12 yrs in Nov.) & my Grandmother died Jan. 17th of this yr. Both of my experiences with Hospice were out- standing. My family & I found the Hospice staff to be very concerned about the comfort & well being of my Grandmother, however they were equally as concerned how my family was coping w/ everything that was going on. I would also like to thank you for consistently writing practical,down-to-earth,compassionate blogs based on your clinical practice. I hope that should I ever need an oncologist,I will find one as intelligent,down-to-earth,& compassion as you.
    • D Someya Reed
      I think the reason, at least for me, of mentioning the hospice worker’s feelings of misplaced duty was to illustrate that just as we can have misunderstandings about hospice, sometimes so do hospice workers. Or, they may become overzealous in their role and lose sight of what should be done (as Dr. Salwitz is stating here). I truly am very glad that the situation worked out well for each of your grandparents. But what if it hadn’t? Do you feel that you, at those times, would have known exactly what to do if a problem arose? As in this posting, if you had wanted a 2nd opinion, who would you have gotten it from? What if they weren’t available and the hospice staffer was quoting you some official sounding regulations that she said allowed her to do this even if both you and your grandparents objected? What would you do? I wholeheartedly agree with your "should I ever need an oncologist" comment.

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