When end of life care becomes a confrontation

How dare you!

Life can change in a heartbeat. Most of us believe that our lives, our loves and all the that things that make us who we are is a gift from a higher power. One that can be taken away as swiftly as it is given. But somewhere in the shuffle of taking kids to practice, catching up on emails, worrying about bills, and the search for the perfect barbecue, it’s all too easy to forget the truth of life. The one truth. The one single thing that life guarantees each and every one of us. From the moment we take our first breath,  life makes to us but one promise. The promise that our life will someday end.

Who the f— are you!

For some of us, death comes after a lifetime of achievement, for others all too soon. For many it will be feared, for others it will be welcomed as their bodies wither away. But for more and more of us in our increasingly sterile and safe society, it is simply not to be thought of at all. An unwelcome stepchild locked tightly away in the attics of our consciousness. Like a demon in waiting, we reshape it, remake it, remold it, until it becomes an ever distant sunset that bookends a romantic dream of a life full of love, accomplishment, achievement.

Who do you think you are?

Until finally, that inevitable day approaches. A man or woman in a white coat tells you the terrible news that your loved one is passing away. That yes,  they are alive and can be kept alive, but there is practically no chance that they could recover. They will never go back to the person they were before.

You have no right to say that!

I am that man in the white coat. And these have been the worst moments in my career. My consolation is that the person I am speaking to has it much worse. This is the worst moment in their life. As their doctor it’s my job to save their loved one. But when that is not possible my goal shifts to guiding them.  To steer them away from false hopes and to help them face the inevitable. To shepherd  them away from wasting their energy, their emotions, their wealth on a futile adventure.

Get out of here!

Yet, despite my best efforts, there are those that sit behind a thick coat of armor that even the most gentle words, and sympathetic ear can not pierce. They return my attempts with little but contempt. With epithets that you see throughout this piece. With accusations of incompetence, of greed. They spur any notion of providing naught but comfort for what will be their loved ones final days. They demand more. Better. Faster. Newer.

Where’s my regular doctor?

I know it’s not personal. I know they’re simply grasping at hope, they’re not ready,  it’s not their fault.  It’s death rearing its head, its years of denial, but the anger scars none the less. Almost as much as the sight of a human being struggling against the inevitable. Forced into an overtime of intensive care with its pokes, prods, measurements and interventions that blur the line between prolonging life, and prolonging death.

I don’t want to hear that!

And I am not alone in this observation. A recent survey of critical care physicians like myself highlights the scope of the problem of providing futile interventions towards the end of life. During this study, physicians felt that 20% of the patients that they saw were receiving care which they would identify as futile. 69% of those patients never made it out of the hospital. Those who did were “severely compromised” with another 16% passing away in the next 6 months (total mortality of 85%). This is an increasingly important problem, as collectively ICU’s are becoming the final resting place for 20% of people in our nation. The total cost to continue  interventions in patients in which they were perceived to be futile was $2.6 million.

Don’t say that!

During a previous age there was no need to talk about the end of life. People didn’t live as long, and there weren’t the interventions available that we have today to keep them alive. Rural life provided an opportunity for people to become familiar with death in a way that our modern lives don’t.

But there’s a difference between living, and being kept alive. Too often, the question doesn’t first come up until a person is in the ICU, the last and worst place to discuss it. That would be akin to asking someone who’s falling from a cliff if they want help. The answer is of course, yes. Except for many people we can only pull them up a small amount.  They are still going to fall when we let go. That’s the definition of futility.

Somehow, someway, we need to reconnect with our lives and our deaths. We need to stop fearing the inevitable. Doctors in outpatient settings need to start initiating these conversations. And patients need to understand that just because we are talking about it, doesn’t mean that your death is imminent. Nor does it mean that your doctor is giving up on you.  We need to have open and frank conversations with our families about end of life, and what we perceive as a life worth living and one worth leaving.

You are not God!

No, I am not. But I believe that He is watching.

Deep Ramachandran is a pulmonary and critical care physician, and social media co-editor for the journal CHEST. He blogs at CaduceusBlog and ACCP Thought Leaders, and can be reached on Twitter @Caduceusblogger

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  • matt19799

    Outstanding article ! This topic is critical to the future of medicine

  • http://onhealthtech.blogspot.com Margalit Gur-Arie

    I don’t quite understand the numbers…
    According to the cited survey, the $2.6 million in futile care represents 3.5% of hospital costs for ICU patients, so generously assuming we can extrapolate to all critical care, this would mean 3.5 % of the approximately 5% of total health care expenditures incurred by critical care. This is 0.175% of health care expenditures. So we are looking at around $5 billion dollars out of nearly $3 Trillion.
    Is that a lot?

    • PoliticallyIncorrectMD

      Is that negligible? Also, even if it was $$$ neutral, should it be provided?

      • http://onhealthtech.blogspot.com Margalit Gur-Arie

        Of course not…. even if it were “free” it would be a tragedy…. but let’s just keep the facts straight.

  • PoliticallyIncorrectMD

    I think we (the physicians) should take some responsibility for this state of affairs. We allow this to happen in the name of patient autonomy [to choose useless or even harmful interventions if they choose so]. Some groups withing the profession are more resistant to this absurd than others. I have never heard of organ transplantation or heart surgery performed just because of the patient’s / family’s request.

  • SarahJ89

    This is very well written.

  • SarahJ89

    And it’s impossible to have that conversation with every family member, especially in advance and with today’s mobility. There’s always someone who lives far away, plus there’s HIPPA concerns in having conversations with family members. And when the patient is unconscious it’s those very family members who make these decisions.

    • PoliticallyIncorrectMD

      Those conversations should take place with the patient (not the family members) and be well documented in case someone wants to do something contrary to the patient’s decision. As physicians, we are obligated to make sure patient’s preferences ( not anybody else’s) are followed.

      • kjindal

        what if the patient has advanced dementia, g-tube dependent, and bed bound for the past 5 years? And has no pre-existing advanced directive? this is a common scenario. In NY the FHCDA addresses this, and essentially allows families to make such decisions for these patients.

        • PoliticallyIncorrectMD

          Just because families can make those decisions does not mean they should. I assume this patient wasn’t born with advanced dementia and g-tube. Somebody (perhaps PCP ?) should have seen it coming and should have discussed and documented things before dementia became advanced and g-tube was placed. Don’t you think so?

  • Lynda Schwemmer

    Very wise and beautifully written. Thank you.

  • Rachel Phillips

    Thank you for this wonderful and very important article. Having worked in ER and ICU for over 20 years, I am grateful to see that physicians are beginning to want to be involved in dealing with terminal or deathly ill patients. In most of the cases that I’ve worked with, the physicians just delivered the news and left the nurses to assist the families with the emotional turmoil and conflicting feelings. A lot of nurses avoided this as well. Because I saw the desperate needs of the patients and families that weren’t being met, I made a conscious decision to forge through the discomfort and learn how to provide support during the dying experience. I’m not a hospice nurse, but as you know a lot of ICU patients do not recover.

    I’ll never forget a patient in a Southern California ICU who had a long history of alcohol addiction with Stage IV esophageal varices. He was only in his late 40s. He had a Sengstaken–Blakemore tube through his nose to keep pressure on the varices which was tied to a football helmet grill to keep it in place for about 3 or 4 days. The physicians had finally told him that they could not operate on him and that it was his choice to keep the tube in or to decide to take out the Blakemore which would inevitably (and probably quickly) lead to his death. Then the physician turned around and walked out. The patient had a look of complete panic and confusion on his face. He asked me to sit down and talk with him asking me for my opinion on what he should do. Of course, I told him that I could not make that decision for him but suggested that we look at all of his options and how he felt about each option. Again, I explained everything clinical to him in detail so that he could understand and trust what he had been told and feel like he was making the most informed decision he could make.. He asked me if I had ever been with other dying patients and if I could describe a “good” death vs. a “bad” death. His question, the way he put it, actually gave me a very effective way to discuss dying decisions with many other patients in the future. Just like life… you can decide to live a good one or a bad one. In some deaths… one can also make that decision about a “good death” or a “bad one”..

    He asked me to sit with him for awhile while he thought about it and decided that in 2 hours he wanted to call the physician to pull out the tube. I don’t know why he decided 2 hours but I think he was just so miserable and tired from fighting for his life. He wanted me to stay with him the whole time as he was dying. He was able to suck on ice chips as the blood was being pulled out of his stomach with the ngt tube and talked with me about his life, his dreams and his regrets. He eventually told me he felt very tired. He took my hand squeezed it and thanked me for helping him and then went to sleep. I felt such a sense of respect and tremendous humility and importance in being able to be there for another person at such an important, last event of their life. Physicians are really missing out on that experience with patients when they avoid such interactions… that though uncomfortable… are often more priceless gifts that you can give your patients and yourself than when you can easily heal them physically. I think medical students and residents should be trained in more depth regarding treating the dying.

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