by Patty Capuciati Conwell
One weekend in 1990, while I was pregnant with my first child, the phone rang and my father was on the line. My grandfather had had a massive heart attack.
With great concern, I rushed to the Emergency Room.
As the nurse in the family, I knew it was my job to assess the medical situation and report back to everyone, and to make certain that my grandfather was receiving the best possible care.
The paramedics had found Grandpa unresponsive and unable to completely oxygenate his blood on his own. So they had intubated him – a tube was placed down his airway to facilitate breathing – en route to the ER. At the hospital, the physician explained to me the gravity of his prognosis. There was severe damage to Grandpa’s heart – more than half of the heart muscle had been deprived of oxygen during the attack. The best-case scenario was that he would only be able to live bed-to-chair, as his heart would simply not support or withstand additional activity. My grandfather would never get his life back.
Sadly, this outlook was unacceptable to him. There was one point my grandfather had always made abundantly clear to us: if he could not completely care for himself and do what he was used to doing, then he didn’t want his life extended by artificial means.
I called the family and had them come to the hospital as soon as possible. Many of his children needed to fly to Connecticut from other areas of the country. We were all able to get to the hospital within 24 hours. At this point, my grandfather had been transported to the Intensive Care Unit, with the tube still inserted. We promptly held a family meeting to determine the course of action for Grandpa’s care. I have to say, we were very fortunate (on the family front) that everyone was in agreement. As hard as it was to let him go, everyone concurred that his wishes should be followed.
Now you’d think this would be the hardest part – but the trouble was far from over. Immediately after the family meeting I went out to the nurses’ station to inform them of the family’s decision. By this time we had with us, as irrefutable evidence of his wishes, a copy of Grandpa’s Living Will, which clearly stated he did NOT want life-supporting measures taken.
Much to my surprise, the nurse’s response was, “I have to do blood gasses to make certain we can remove the tube.” In other words, she needed to make certain he would remain alive and oxygenating enough when the tube was removed. She had completely missed the point of everything our family had just discussed.
I felt compelled to phone my grandfather’s cardiologist to inform him of the family decision and enlist his support in making sure Grandpa’s wishes were followed. Despite the tragic nature of the decision, we reached an understanding that removing the breathing tube was the proper course of action, and the cardiologist would relay the information to the medical team.
We also needed to address the IV in Grandpa’s arm, which was delivering a medication to bolster his blood pressure. I asked my grandfather if he wanted this removed as well. His response was simple and direct. “You know best,” he said.
I told the nurse to remove the IV. My grandfather passed quietly in his sleep a few hours later.
My grandfather was proactive by sharing his wishes – not only in the form of a Living Will but also in discussions with his wife, children and grandchildren. However, despite his efforts, he was still in a situation where implementing these wishes became problematic.
We all know that advancements in medicine allow people to be kept alive beyond the body’s ability to do so on its own. If you add the fact that paramedics, nurses and doctors are trained to save lives at all cost, it’s easy to see how such a conflict gets started. And while we should be grateful for both of these facts – that medicine has come so far and medical personnel instinctively try to extend lives – it can lead families down a road where their loved ones are either suffering or left with lives of little function or comfort. Unless a family has been down this road before, it’s hard to anticipate end-of-life realities. So it becomes imperative to consider these situations before they occur.
This process has been made a bit easier over the years as we, the health care team, become much more attuned to the needs of the patient as it relates to end-of-life issues. But here are some helpful steps you can do now:
* Medical professionals are trained to fight to extend lives. It becomes our responsibility to ask at what cost. Good questions to consider: What is the likely outcome? What is the most we can do? What is the least we can do? Once you’ve answered these three questions, you and your loved ones can begin to make an informed decision.
* Make certain you and your loved ones discuss the hard questions that would accompany an unforeseen catastrophe. It’s easier to ensure these wishes are followed if the family has documentation and a united front.
* Everyone should consider creating a Living Will, which is also called a health care directive, to provide the medical team with a document that outlines your health care wishes and whom, if anyone, you have named as your health-care agent. This link will help you develop a Living Will to meet your needs: www.legacywriter.com. This is a free service unless you also opt to write a Last Will and Testament, which carries a fee. You will be prompted to answer a few questions and, when you’re finished, you can print, download or have the document either emailed or snail-mailed to you. In both cases, you must sign the document and have it notarized.
* A Do Not Resuscitate order, known as a DNR, should also be in place if you object to life-saving measures, such as CPR, should your heart stop. This is a part of the Living Will as well, but can also be handled upon admission to the hospital.
* Both the Living Will and DNR can be registered electronically with your local hospital in order to prevent unwanted heroics.
* Consider placing a Living Will and/or DNR with the Vial of Life information you keep on your refrigerator making it easy for emergency medical professionals to locate and obey. See more about Vial of Life here.
Photo credit: Peter Capuciati
