BookBait

When was the last time you considered your own death? I bet never. When was the last time you were present for the death of a friend or loved one?  Death is removed from our immediate view and yet we are fascinated with it. Somebody else’s death, that is.  Death is in our face every day. For the last two years we heard death tolls announced every day and there is no shortage of violent crime to be reported. Death always seems to be in the plot of movies and on TV. I confess, I like  movies with high body counts as much as the next guy.  All of the death in the media and the fact that we do not actually witness dying only serves to make your own death not real or somewhere distant. This distance makes it easy to deny that death will ever come to you. Well, whether you have considered your own death or not, and in case no one  has told you, you are dying.

In my career as a nurse, I have served the role of the announcer of death many times for patients and their families. In my personal life, for family members as well.  I served that role because nobody else wanted to do it and because it was the right thing to do. Shortly after I started my nursing career the Patient Self Determination Act went into place. This gave patients the right to make decisions regarding the care they would like to receive at the end of life. More about that later. What is important to know about this is that it changed the way physicians practiced and the way the healthcare system works. 

Our healthcare system honors your autonomy, value and individuality. It asks you to participate and take responsibility in your own care and decision making.  If you do participate and take responsibility the data shows that you will live longer.  When it comes to decisions around the end of life,  this collaboration requires that you are sufficiently informed and have an understanding of your values and beliefs. It also requires a willingness to take responsibility that those values and beliefs are honored. Unfortunately we are not being as responsible about our health and end of life decisions as we could be. 

 In our modern healthcare system the default position is to do more, find a cure, extend life at all costs. Some progress has  been made  with palliative care and hospice, unfortunately those options are offered to us way too late for real benefit because physicians don’t want to tell you that you are dying. The most common reason cited for this is that they are concerned that it may take away your hope. Really? We all have many things to hope for and living forever is not one of them. It is not all the physician’s fault. Most of us  accept end-of -life care that is inconsistent with our stated wishes. This is because only one in three US adults completes any kind of Advance Directive for End-of-Life care. Most of us have not faced the fact that we are going to die and even fewer have taken steps to insure that our wishes are honored. This lack of commitment to our values, planning and communication is highlighted by another  fact. Approximately 80% of Americans report that  they would prefer to die at home if possible. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home. We are failing at making sure our final wishes are honored. 

 I have been inspired by patients who know that they are dying and decide to refuse non-beneficial treatment. They tell the doctor and their family that they are dying and orchestrate the day and time that they want the treatment to end. I am not talking about suicide. I am talking about a person with a terminal condition who knows their values, beliefs and what is important to them.  They take ownership  and invite family to say goodbye. Those are the rare individuals. All too often, we give up our control and that leads to an unimaginable level of suffering. My father’s death is an example of what happens when you don’t make a decision and leave your care up to our healthcare system. 

My father was 55 years old when he had his first heart attack. He was helping me work on my house and I found him sitting on the back steps rubbing his left arm and he was very gray. I, being a critical care nurse asked; does your chest hurt? Yes, was his reply. I told him that he was having a heart attack and we needed to get him to the hospital. His response was, I just need to lay down for a while and I will be ok. I told him that if he just layed down he would die. He never really took good care of himself.  He lived life on his terms. I got him to the hospital in time for a cardiac catheterization which opened the blockages and he was on track for a full recovery with no lasting damage to his heart. Great news right! Well, two weeks later he was  home alone and suffered chest pain again and delayed getting care because that was just who he was.  This delay led to severe lasting damage to his heart which shortened his life.  For the next 5 years of his life, every time I saw him I tried to get him to discuss what his wishes were, I knew his prognosis was life limiting and that he would die. I would ask, What do you want us to do if your heart stops?” His reply, “just flush me down the toilet”. I could never get a straight answer but his attitude informed the decisions that I eventually would need to make. My dad just would not take responsibility. 5 years after his initial heart attack and much disability he was admitted to the hospital emergently. By the time I got there, he was on a ventilator for respiratory failure due to his heart failure and pneumonia.. He was born with one kidney and that one kidney was failing because of heart failure. Since he did not make any wishes known he received full support. That means he had a ventilator to breathe for him. Continuous dialysis because his one kidney failed due to severe heart failure. He was septic from pneumonia and he was on 2 vasopressors to support his blood pressure. This went on for 5 days and when his respiratory status deteriorated so much that he needed to be medically paralized and sedated to be able to ventilate him. I told the doctors that we would withdraw care and allow a natural death. The doctors did not come to me to discuss the prognosis. This could have gone on for weeks.  When I spoke with them, they agreed that he was not likely to survive. I had to bring it up. Maybe they thought I knew because I was a critical care nurse. I called my mother and siblings and explained to them what was happening. They all understood that he wouldn’t want any of this.  The point is. He did not decide. I had to make the decision for him. Much pain, suffering and expense could have been avoided had he been willing to take ownership, examine and express what was important to him. He made no plans and said no goodbyes. Unfortunately too many of us refuse to do the work and come to the same end. 

Our culture puts a lot of emphasis on health and well being and life at all costs. Unfortunately there is an ever growing portion of our population who continue to struggle with taking control which has serious implications. According to the CDC, 60% of American adults live with one chronic disease. 40% of Americans have 2 or more chronic diseases and those are the leading cause of death and disability. Obesity rates have been on the rise. The CDC reports that obesity prevalence, pre-pandemic, was 41.9%. In the preceding 20 years, the obesity prevalence increased from 30.5% to 41.9%. During that same period, the prevalence of severe obesity increased from 4.7 to 9.2%. This is mentioned because obesity-related conditions are life limiting conditions such as heart disease, stroke, type 2 diabetes and some cancers. Life limiting means that having the disease will shorten your life. If you have one of these diagnoses you must know that you will die from complications brought about by having these conditions. This should serve as a wake up call because these conditions are not treated as terminal until you become severely debilitated.

We die as we live. There are those who are clear on what is important to them and what is not. They make decisions based on their values. They gather information, plan and take action. It doesn’t take great resources for this. It takes some self reflection and commitment.  On the other side, there are people who take no ownership. They may know what they want and don’t want but there is little commitment to decision making and responsibility. When it comes to healthcare, If you choose not to decide. You still have made a choice. Unfortunately if you don’t decide, you may end up getting a whole lot that you don’t want. 

I have attempted to spell out the problem. The main purpose of this book will be to explore solutions and inspire action. 

I will  include more stories, methods and tools to use to help individuals get clear on their values and what gives their life meaning.

Ways to put those values into action so you can live now and die congruent with your unique values.

Using those identified values to create meaningful advanced directives for health care. 

• “This is my first attempt at starting a book. How did this land with you?”
• “What would you like to hear about next?”
• “Does this feel like a book you might read? If so, what else would you want included?”
• “Now, I want to hear from you. What’s your #1 question about [insert topic]?

Thank you.