Live happily, go peacefully

Whether you believe in science, God, neither, or some combination- we can all agree that death is inevitable. Due to the finality of our lives each of us should understand and prepare for that moment not only for ourselves, but also for our loved ones. Have you ever thought about death? When the time comes how would you want to die? Where would you want to be? Who would you want around? It is an odd thing to think about but in my practice it’s a discussion with patients I have often. Most people I encounter have never answered the above questions and even if they’ve thought about it, have never discussed it with their friends and family.  It is imperative that you answer those questions and discuss them with people close to you. As a physician I treat patients medically, but I also spend time figuring out how to ease their suffering and pain towards the end of life. Though medicine continues to advance and people live longer, we have a generation of baby boomers (our parents) who are now entering their 60s and 70s. It is important to know their wishes now when they have the full capacity to make these decisions. The topic of end of life becomes even more significant as a patient becomes sick and is admitted to a hospital. If family or health care providers have no knowledge of how you want the end of life to take place the situation can become complicated.

I am sure you have all heard of the infamous DNR: “ Do Not Resuscitate”.  The DNR conversation is something that doctors, patients and families alike can dread. But the discussion can go smoothly if the right questions are asked before the end of life is near. So what is DNR anyways? DNR is a written legal order usually in the form of a document that withholds cardiopulmonary resuscitation (CPR) for a patient in the event their heart stops. As I wrote that last sentence and read it aloud I find myself disliking the words “resuscitate” and “withhold”.  Using the word resuscitate, especially when discussing a sick patient in the hospital, can be misleading and confusing to patients and their families. When CPR is performed the chances of survival are already slim. Most studies to date show dismal rates of patients walking out of the hospital after undergoing CPR. So to say “Do Not Resuscitate” implies that when we do CPR we are able to miraculously resuscitate patients and therein the confusion lies. The word withhold is terrible as well because when you tell a patient or a family you will withhold a possible measure, it doesn’t resonate with someone who is not from the healthcare field. Doctors are not to withhold life sustaining procedures are they? For these reasons I think the term DNR should not be a part of hospital vernacular. We should rather ask patients if they would like to pass naturally versus hooked up to machines with a minimal chance of coming off of those machines. We should tell patients that we, as physicians, will do everything in our power to save their lives if a reversible cause is apparent. But we should also make clear that if a situation or illness arises in which a patient would not benefit from extreme measures then we will do everything in our power to make the patient comfortable during their foreseen death.  Patients and families also need to know and understand chances of survival after machines and certain medications have been used. Education is key and CPR for many patients is an uncomfortable and painful way to live their last breaths. Before initiating CPR patients and families should be aware of how it is performed and which patients actually benefit from CPR and who it would do more harm for.

Imagine this scenario-you and your family have never spoken about end of life and an elderly 90 year old family member, who has many chronic medical problems, winds up in the hospital and is actively dying. The patient is in such critical condition that they are unable to communicate. You, as their next of kin, must make medical decisions now. You are probably in tears during this entire process and unable to comprehend the most basic of conversations with the slew of doctors, nurses and other family members that are coming in and out of the room.  Your emotions are heightened but still, you are trying to keep up the hope and praying for your loved one.  A doctor who you have probably never met, at times an intern, comes in to speak to you about your sick family member. The intern asks you about “code status” and if the patient is DNR.  You ask him what he means. “If the patient’s heart were to stop beating do you want us to try and resuscitate him?” In your current emotional state you yell back at him, “Of course I want you to resuscitate him, do everything you can!”

The patient goes into cardiac arrest (heart stops).  The family and physician have just agreed that the patient is full code meaning CPR must be performed. A code is called overhead and the code team rushes to the room. CPR is initiated. There is a person pounding on the patient’s chest trying to make the heart start pumping again. Ribs are cracking. Another person is sticking needles into the patient to obtain an intravenous line in while someone else is drawing blood from another limb. Anesthesia comes in to place a tube in the patient’s mouth. 10…15…20 minutes have gone by. The family is outside the room looking at what is going on in shock.  After some time the doctor who is leading the code decides to stop the code in agreement with the rest of the team as the patient continues to be pulseless.  The patient has now passed.

To be clear, if you are the family member who made the above decision you are not in the wrong.  The majority of people, under those circumstances, would want everything done for their family member.  If you never had the opportunity to be educated on the topic by a healthcare provider then you would not have been able to make a fully informed decision. It is imperative that in those types of life or death moments a doctor explains to you what is going on, what the chances of survival are, and what the quality of life would be for the patient going forward. It is your job as the decision maker to trust that the physician understands the risks and benefits of these interventions and whether or not they would do more harm than good.  In several countries across Europe and Asia the DNR order is not even discussed with family as health care providers are able to determine who would benefit from CPR based on medical judgment alone.  In the United States a patient has the right to make this decision and if they are unable to then their health care proxy makes that decision; if no health care proxy has been designated then the next of kin decides.  The above scenario in which CPR was done on an elderly patient with multiple medical problems did more harm than good, as the patient’s last breaths were not under a state of comfort. This could have potentially been prevented if the code status had been talked about at an earlier time in life. Often times the primary care doctor may neglect having these conversations too, especially if their patient is otherwise healthy. When a patient is explained all options during the course of their life by a physician they know and trust, the choice to be DNR or full code is not made in the heat of a moment.

Each patient, family and doctor is different. Every patient is extensively thought about and treated.  What many family members sometimes fail to realize is that DNR does not mean, “Do not treat”.  Treatment comes in various forms: fluids, antibiotics, pain medications, the list goes on.  When choosing DNR, it is not the same as choosing not to be treated.  If your physician is asking you about your code status, it does not mean he has given up on you or your loved one.  He still wants to treat you, but is looking at your age, condition and quality of life when deciding what treatment would suit you best.  There are many times that CPR does work under the right circumstances. I have chosen to dedicate my career to the field of pulmonary/critical care because I do believe that there are patients who are critically ill and can improve with CPR and mechanical ventilation.  But the scenario of causing patients more harm than good by doing CPR and mechanically ventilating them while they are actively dying happens in hospitals every single day across the country. Patients and families need to be properly educated so that this trend does not continue. Patients should not suffer towards the end of their lives.

Many times when families are left to decide the outcome of a loved one I find that sometimes they “treat themselves”.  It is normal for a person to want to spend more time with someone they deeply care about, but buying more time comes at a cost to the patient. The patient is connected to machines and tubes, ultimately suffering while dying. Families often don’t realize that the patient is undergoing much anguish by being kept “alive” this way. At these times I often ask family members if the patient would want to go through this suffering. I also ask families to imagine themselves in the hospital bed.  Sooner or later the patient either passes connected to machines or the family finally decides to withdraw care. Families should also understand before deciding to use machines that it is often much harder to withdraw care (pull the breathing tube out) on a loved one than to not undergo the initial CPR.

End of life is not an easy topic to discuss when a patient is healthy and certainly not an easy topic to discuss in the hospital while a patient is sick. With proper education between physicians and families this can be corrected. I ask if you are reading this and have never spoken about end of life with a loved one, to do it now.  As physicians, we must do whatever we can to save lives but also know that life is finite and when the end is near we must strive to help patients pass as peacefully and comfortably as possible. Have a plan for how you want to pass and discuss your options with your family and health care provider. It will make your life, and your loved ones, much more dignified in the end.

-Doctor P