A Good Death

Starting off my medical musings talking about death may not be the way to reel people in, but the concept of a death and dying is one that you cannot avoid when you are a physician.  For most of our patients it is something that they never think about until all of a sudden it is upon them or a loved one.  Even those with known terminal diagnoses are still be taken aback by that moment of finality when you tell them that no, there is really nothing left we can do- this is the end.

Helping patients and their families at the end of life is at once the most difficult and rewarding part of my job.  The moment when you look a person and their loved ones in the eye and tell them that they are going to die is one of the most intimate things you will ever do.  Many times the person who is actually dying will be too sick to understand and their family will be listening in their stead. Each person and family needs to be told in a different way, because each person will cope with this news differently.  Some people will want all the news broken at once, so they can grieve completely and plan.  Some will want it delivered in stages and small doses, to preserve hope for as long as possible.  Every sentence out of your mouth is a litmus test for how to continue proceeding and to build up the relationship you have started with the patient and their family.  If you say the wrong thing, and you lose them, that bond is hard to build back up.  In those moments, it is very important to find out what the patient would want done at the end of life.  What does a good death mean to them?  For the vast majority of people it is not dying while in the ICU on a ventilator, but that is where a lot of these conversations take place- once that has already happened.

One of the hardest things to do as a caregiver is to stop giving care.  We are trained to “fix” and “do.”  Many times it is easiest to continue to press onward indefinitely then to really step back and look at what then end result is.  If the cardiology doctors have the patient’s heart stabilized with anti-arrhythmic medication, the pulmonary doctors have their breathing stabilized with a ventilator machine, the gastroenterology doctors have their gastrointestinal bleeding stabilized with a proton pump inhibitor, the infectious disease doctors have their bacteremia stabilized with antibiotics, the orthopedic doctors pinned their broken hip, the hematology doctors are transfusing blood and platelets every day, and the patient is getting nutrition through an orogastric feeding tube- then everything can drift forward indefinitely.  The questions we have to ask ourselves as physicians are: will this patient recover? What will their quality of life be like if they do? In this way we can have informed discussions with patients’ families about decision making.

The problem is that many times the prognosis is far from cut and dry.  When a person has been very ill, we sometimes cannot tell how much function they will recover. Will they be able to speak, eat, sit up, walk again?  It will sometimes be weeks and even months before we have a full idea of their outlook.  These uncertain cases are the most difficult ones for us as physicians.  Other very challenging cases are ones in which we can clearly see that a patient will not recover from a devastating injury or illness.  Many times these patients are already very ill in the ICU and the decision is made to withdraw life support.  This is a complicated process in its own right that has many regulations in place that vary from state to state.

Each of these scenarios have a common thread.  They require communication, in spades, between the doctor and the patient and/or family.  This is one of the biggest barriers to making sure that people can have a good death.  Time.  To talk to your patients in the office about code status and living wills takes time.  To talk to every patient who comes in to the hospital in depth about code status takes time.  Time is something we doctors have very little of to spare, and it limits our ability to fully engage in these discussions with our patients.

Most patients I admit to the hospital have never heard the words “code status” before.  These are patients with severe chronic obstructive pulmonary disease, coronary artery disease, congestive heart failure, diabetes, peripheral vascular disease leading to amputated limbs.  In other words- very sick people, but their understanding of their own illnesses is limited and skewed.  What does this mean in terms of their thoughts about death? It means that the 75 year old patient with COPD who is chronically on 4 liters of oxygen has not thought through needing to get resuscitated or intubated or the possibility of a tracheostomy- even though that would be a permanent fixture and he could be comatose on the ventilator for the rest of his life.  It means that the 80 year old patient with CHF whose heart pumps at only 10% of normal strength continues to want full resuscitative measures even though she states she never wants to end up “a vegetable.” If asked outright, both of these patients would tell you they would like to die at home with family around them. Both patients have high risk factors for impaired quality of life after CPR and for CPR to not be successful due to their severe chronic conditions; meaning, if they were to ever need CPR the chances of them recovering afterwards without any long term problems are poor.  CPR works well on people who are healthy and young.  As you age and the more medical problems you have, the less likely it is to be successful.  The more likely that if you need CPR you will wake up with more debility and problems that you started with, along with many broken ribs.

So how can we make a change?  Start talking about it, for one.  Death is something to be planned for and accounted for; it will happen to us all eventually.   The way to have a good death is to make your wishes known to your family and your doctor as early as possible. This also takes the burden of making decisions off of your family and lets them be at peace should they have to speak for you.  It is very hard on families to be placed in that position, and knowing that they are doing what you would have wanted eases the hardship.  We, as physicians, need to talk about it as well.  It is so hard to talk about bad diagnoses and prognoses, especially when there is a lot of uncertainty. I myself am still a young physician, and I am still learning.  I have had a couple bad prognosis conversations go poorly.  Even if you deliver the news as kindly, slowly, and deliberately as possible- it will be too overwhelming for some people.  There are people and families that will continue to hope for a cure right to the very end.  These cases are very heartbreaking to be a part of; the patient will almost always die in the hospital ICU after undergoing many tests and procedures and medical treatments that were futile in the end.

I recently saw a former patient’s family in the hospital.  This patient had come into the hospital in the last few days of her life.  Her family knew she had been declining, but they had not grasped yet that she was going to die quite soon.  She had advanced dementia and her nursing home had sent her into the hospital for severe dehydration and possible feeding tube placement. We all sat together and I explained to the family what was happening and that she was dying.  I asked them what she would want to do if she could tell us in that moment.  They all agreed she would want to be at home with her family.  Within the day our hospice team arranged this.  She was transported home and died the next day, surrounded by her husband, children, grandchildren, and great-grandchildren.  When I saw the patient’s family again recently, they thanked me profusely.  She otherwise would have passed away in a nursing home or at the hospital, and they were happy and relieved that they had the chance to spend her last day together at home. I accepted their thanks; I was glad I had helped her to have a good death.

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