Medical Futility
Nothing in medicine is more painful, more torturous, more heart-wrenching than providing futile medical care to a patient who is suffering. I am not talking about a person who carries a terminal diagnosis but is still coherent and choosing to pursue experimental treatments, even if they are hail mary options. I’m talking about the patient who is no longer mentating, who needs modern medicine to breath for him and a tube to feed him, who is developing decubitus ulcers all over his body from laying in a practically vegetative state, who moans if the ativan and morphine wear off, who has to have the suction jammed down his throat to remove the sloughing mucosa from the back of his dry, blood-crusted oropharynx, who is barely recognizable because fluid has left the intravascular space and pooled in every dependent area of tissue, leaving him swollen and water-logged. I’m referring to the patient whose family members STOP visiting his bedside because even they can’t stand to look at him like that anymore. Yet they still want everything done to keep him from dying.
Talking and pleading with families in the most compassionate way I know how becomes a frustrating effort when they continue to believe a miracle might occur. In one breath, they realize that if God wanted a miracle to occur, he would make one occur. But in the next breath, they aren’t confident enough in their God to allow us, the medical team, to stop prolonging the patient’s suffering and just leave it up to God.
I know it often takes people a long time to come to terms with a family member’s death. I don’t ever want to be in those shoes because I can’t imagine how painful it must be. I never know the people I take care of before they became ill, but for me to show up and see them in a state of suffering day in and day out while their families debate pursuing aggressive, futile medical treatments, is really hard. Our 1st obligation as physicians is to “do no harm,” but I can’t think of anything more inhumane than prolonging death under those circumstances. Yet, in this country, we are virtually powerless and our hands are practically tied. We aren’t able to say “I’m sorry, I cannot / will not put a feeding tube down your father’s throat because it will only cause him more discomfort and there is truly no benefit to him.” In an ideal medical world, I would be able to say “I’m sorry, but it would be against the medical oath I have taken as a doctor.” But we don’t live in Europe, we live in a highly litigious country where doctors are puppets out of the fear of a lawsuit. So we go on torturing patients when they’re families demand us to. And we bring in palliative care, case managers, hospice, the ethics committee, and so many other people to try and help us make our case. But in the end, we bend to the families’ wishes and allow the antibiotics, the feeding tubes, the blood draws, the suctions, beeping alarms, the rib-cracking CPR, the defibrillator, the breathing machines to continue to prolong suffering. It’s truly disturbing. And in the end, the patient dies a painful death, and all that is gained goes to insurance companies – the hundreds of thousands of dollars our futile care costs.
If you don’t have a living will, even if you are 30 years old and healthy as can be (believe me, I’ve had this patient who was hit with something out of the blue too), sit down with your family and talk about these things. Everyone who sees these patients always says “please don’t ever let me go like that,” but it’s so hard for the family members left behind to make such huge decisions when they haven’t explicitly had these conversations with their loved ones before tragedy befalls. No one wants to be responsible for saying “ok, withdraw treatment and let him/her die in peace.” So everyone defers making a decision, and the patient just lingers and suffers. Something to think about. Here’s a site to help you think through these things if you haven’t before: http://www.yourcommunityhospital.com/LivWill5wishes.cfm
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17 comments
I never cease to be amazed at how lawsuits are bandied about like dirty socks in the US. I don’t want to sound negative about the US because frankly I love the place and if I hadn’t met my husband when I did, I was on my way to making it my home, with work permit/job offer everything all lined up. This is one factor of the US society that I have never understood. It’s like there is an inability in the psyche (of the folks who demand lawsuits) to see basic reason and logic. The whole ‘caution contents hot’ -McDonalds coffee thing blows my mind! We all know that the person who sued McDonalds was ‘chancing his arm’ we all know that it was a stupid lawsuit and yet it goes ahead.
When it comes to medical care, what you related here above was a total eye opener for me. When my father was dying (of cancer) back in February, I saw him waste away in the last two weeks of his life, and I’m always thankful that my sister was there (she’s a highly qualified OR nurse with yrs of experience) to help me make sense of the options. With her medical knowledge to turn to when I had questions it made the whole process easier. But even if she hadn’t been there, I still don’t think that I could have tried to force doctors to continue futile treatments, what is the point? When 5 days before he died we reached a point where his platelet count was zero, and the doctor chose to stop treating the infection he contracted with IV antibiotics) I must admit that I felt relieved. Finally my father would have a chance to GO. I didn’t want him to die, and I didn’t want him to suffer, but at the end of the day logic and reason WINS over emotion and the desire for miracles. Letting him go was a blessing, for him and us. Being there when he died was something I will never forget and seeing him finally letting go, at age 81, whilst holding him in my and my sisters arms was a life changing experience for me. People never seem to understand me when I say it was beautiful. Such a release. Such a relief. If folks could see that, they’d probably choose not to prolong the agony. But then how do you get to that point without letting it happen? Catch 22 methinks. Wow, look I’ve just done a whole blog post in your comments box
I was an oncology nurse for 13 years before beginning my work with Hospice nearly 3 years ago. I wish I had more physicians like you in my area. My work now involves educating healthcare workers, hospitals, SNFs and ALFs about the benefits of Hospice care - not just for the pt but for the families. It is the toughest job I’ve ever had. Something has shifted in this country - death is no longer a natural part of life but is something to be denied.
And you’re right - on the very practical, hard facts side of it is the fact that nearly 63% of all Medicare dollars are spent in the last 3 months of someone’s life. On procedures and “treatments” that really have zero effect on prolongation of life - and worse - have a MAJOR effect on the patient’s QUALITY of life during those last couple of months.
I am so VERY thankful for physicians like you though! Keep making a difference!!!!
I have given this a lot of thought and know exactly what I do and do not want when my time comes, but this post has motivated me to finally print out a living will form and make it official once and for all.
I can imagine how hard it is to deal with cases like that on a daily basis. That’s one of the reasons why I, as a speech-language pathologist, could only stand very brief inpatient acute stints (all those dysphagia referrals for folks who are staring death in the eye! and the resulting feeding tubes, *shudder*). Hang in there.
Thank you for that post. I really think that those serious and sometimes controversial post are very rare to find in blogs, and I think you really have so much to say, and do so great in writing it down. I live in Europe, but actually things are changing here a bit, too. I have recently visited a speech about “medical wills” (don’t know the correct term), and the speaker, a lawyer, said that doctors start to be afraid of lawsuits here, as well. Everybody really should talk about that with their family. Me and my husband both made a will when we got married, for exactly the reason you mentioned: to make it easier for the one of us that would have to make that decision and to stand up for it in front of the parents etc.
There is one thing that the US does a lot better, though: when I lived in Virginia and got my drivers license they asked if I wanted to be an organ donor and then put a little heart on it. I think that makes more people think about it and go for it. We don’t have that here in Germany, you have to get an organ donor card or your relatives decide. But in some other european countries I think it is the other way round: if you don’t say you don’t want to do it that means you want to. Some people just don’t make their minds up or even bother to talk about it to their relatives, and that decision can be really hard for them, too!
I think you are a great doctor, and will really make a difference in peoples lifes.
In 1994 I found my sister dying from a stroke on her living room floor. There was a chance that she could have had surgery to save her, but saving her would probably have mean, at the least, months and months of recuperation, and at the most, a dependency on others for all of her needs. One nephew said do the surgery, one said disconnect her, the niece could not arrive in time to see her mother before the decision had to be made. So it went to my mother to help them. She said disconnect her. This was my mother’s child, her third child and second daughter. And still she said to disconnect. My mother is now dying of cancer. She wants no tubes, no artificial anything. She is trying chemo, but I doubt if she’ll continue with it. Quality of life to her means being out of doors. It does not mean pills that create a schedule for you, sunblock so thick it is like paste, or avoiding the refrigerator for a few days after treatment. She will try treatment because we asked her to, but she will probably forego treatment unless it showed a radical change. So she is making the decision about how she will die and on what terms that will take place. This takes amazing strength, but I think making the decision about her own death was easier than making the decision about her daughter’s death.
I commend you for making this post, Laurie. If even one person takes your advice so that their parent is never forced to make the decision for them, or if even one child is spared making that decision for their parent, it was worth it.
Ruby
My mom die of cancer naturally. All her children made that decision for her. She lived 10 months pass diagnosing at home with her family cooking for her family up to the very last day. She was an amazing woman. Doctors were so puzzled why she had no pain considering the type of cancer she had. I only prayed for her to live well without pain and suffering. I got my prayer answered. Letting go is hard, watching someone in pain and suffering because you can’t let go is selfish.
Thank you for the link
I agree with your post 100%. Did you hear this story on NPR? It’s pretty inspiring: http://www.npr.org/templates/story/story.php?storyId=120346411
I agree with the first commenter - having been with my Dad and my maternal grandmother when they passed away, it truly is a beautiful thing. My Dad was diagnosed with stage 3 colon cancer 9 months before my wedding. The next 3 1/2 years were full of ups and downs for our family, but when the time came, we all knew he was ready to go. His deep faith and acceptance of his situation were awe-inspiring and still bring me to tears, but it was also his wonderful oncologist and hospice team that helped us, his family, to realize how we were helping him by allowing him “to go.”
Best of luck to you Laurie as you deal with the family and patient. And on a lighter note, congratulations on the newest family member!
Thanks for your post. I really appreciate the opportunity to give this more thought. I thought this recent article was incredibly informative on the subject and also made me do a lot of thinking. http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?_r=1
Hey Laurie - long time follower, first time commenter
Another useful resource to encourage people to have those conversations about difficult end of life decisions that I’ve heard a lot about: http://www.engagewithgrace.org/
I love hearing from a physician’s point of view. We’ve had Living Wills for about 10 years. We had to have a Will before we traveled to Vietnam to adopt 8 1/2 years ago. We decided to go ahead & make the Living Wills at that time. It’s so important to talk about it! My husband & I both sat down with my parents & his parents & discussed our wishes. No way do we want to prolong the inevitable….to put our children through that would be so wrong. It would haunt me forever. Nice post! Love that you got me thinking at 8 am!
Total buzzkill. Since my life is already somewhat depressing, I will choose not to ponder it and instead ask you to update the countdown on your sidebar. Anything to look forward to? May be lobster mini-season the 28th and 29th of July? Or my and Alex’s vacation the 7th - 14th of August? Either one would work for me…
My partner asked me why do I read blogs of people I do not even know… so I read him this posting and all he could say was wow… she is a great writer… you so accurately and eloquently portrayed a hard subject.
Thank you. I first visited your blog a few years ago and stop back in from time to time. Our daughter was born with a rare neurological condition and we made the incredibly difficult decision to let her go home with the Lord when she was five days old, after having sustained her life long enough to make an informed decision. It is a terrible place to be - in those shoes, making that decision, particularly as a mother - but the answer there is always, always to respect the person you love enough to let them go. Thank you for the affirmation from a physician and the reminder that we did the right thing. Your patients will be blessed to have you in their lives and you may never know how long they remember you and all you’ve done for them, long after they have faded into your past.
Laurie, my name is Lan-Marie and I am a graduate student at the University of Central Florida. I found your blog while doing research for my master’s thesis on communication and international adoptions from Vietnam. My husband and I adopted our daughter from Vung Tau, Vietnam in September of 2007. I was wondering if I could talk with you about your experiences adopting from Vietnam. I am very interested in what you have to say. I have enjoyed reading your blog as well, it is very informative and well written. Looking forward to hearing from you. Please email me at LanMarieMalin@kngihts.ucf.edu Thanks!! - Lan-Marie
Laurie: Grandpa and I have already taken care of the Living Wills. We both agree with your blog. We also have made known to Linda and the others what our desires are. Love you, Gma
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