I’ve been a Registered Nurse for more than 20 years. As a hospice nurse, I have been up close and personal with death and dying. I’ve held space for patients and their loved ones through difficult and challenging times.
The pandemic, social distancing and hunkering down have given me time to reboot. I’ve reprioritized my life, coming face to face with my own mortality. The possibility of my own death prompted me to update my Advanced Directives and have further conversations with my sons. It has also given me renewed purpose to share my knowledge and experience.
As a hospice nurse, I’ve helped hundreds of people with their end of life experience, ranging from young adults to someone who was 106 years old. Women, men, affluent, poor, from grocery clerks to US Senators, doctors, lawyers, CEOs of multi-million dollar corporations and farmers. Some were better prepared than others and had a more peaceful end of life experience. For those who struggled, the most common denominator was fear.
The fear of death
The sense of fear was palpable when I entered a patient’s home. Family members often said, “I feel like I am signing a death warrant.” They ignored the fact that a disease process was ravaging their loved one’s body. This prevented meaningful conversations which could have helped them understand what their loved one was thinking and feeling and what they wanted. The family and loved ones now had to guess.
Fear adds to the suffering that accompanies death. It causes people to miss the beauty and sacredness of the end of a person’s journey on Earth. To be present and validate a person’s existence is very powerful. Unfortunately, most people miss this amazing experience because they are afraid, unprepared, or too busy with chores. They don’t have the emotional wherewithal to be present. After witnessing this for many years, I made a decision to leave hospice, even though I love that work, to pursue my calling.
Connecting the Dots in Healthcare
I understand that people can’t accomplish all of the important conversations in the last two weeks of life. That’s why I founded Connecting the Dots in Healthcare. It’s a way to help people plan their end of life journey, not their imminent death. It’s a service that provides information and guidance to help people formulate a meaningful end of life plan that reflects who they are. Most people want to avoid thinking about death but those who do make things so much better for themselves and the people they love.
When I was a new nurse working the hospital night shift, I cared for a kind, sweet gentleman who was a dialysis patient. I’ll call him Tom. He was in his 70s and had been a frequent patient because dialysis was no longer working. He needed hospitalization to regulate and support the function of his organs which were deteriorating because his kidneys were failing.
One night when making rounds, I noticed that Tom was awake and asked if he needed anything. He told me that he just couldn’t bear the thought of more dialysis treatments. He loved his family and they loved him very much. They needed him to keep fighting.
I asked Tom if he told his wife how he felt. “Oh no, I couldn’t do that,” he said. “That would hurt her too badly.” I asked if he realized why he had so many hospitalizations. Tom said that the dialysis treatments weren’t as effective but I could tell that he didn’t see the big picture.
I looked into his eyes and asked Tom if he wanted to know what it all meant. He nodded. I explained that dialysis had benefited him in the past but now the stress of the treatments and the disease process were causing other organs to fail. I took his hand and explained that none of these treatments were going to restore his health. He wasn’t going back to a normal life. His life was going to be a series of extended hospitalizations with more dialysis treatments and tests until he died. Or, it was possible that he might die during the treatment.
Tom was silent for awhile. I asked if he wanted me to help him have a conversation with his family. He agreed, so arrangements were made with his wife and daughter to visit while I was working. I helped initiate the conversation and Tom was able to take over. There were lots of tears as his family came to grips with reality. This gentle man was finally able to have a meaningful discussion with the people he loved most. When they understood how he felt, they made a decision based on love. This wonderful man went home and was able to enjoy his remaining time without being hooked up to machines or being poked and prodded by strangers. He died surrounded by the people and things he loved.
Several weeks later I received a note from Tom’s daughter. She shared how difficult it was for her now that her father was gone and how sad she was. She was grateful for having that hard conversation. The brief time at home with her father was beautiful with many meaningful conversations. She and her mother had no regrets. They never had to guess whether they made the right decisions because Tom told them what he wanted.
I will never forget that experience. It taught me the power of open, honest communication.
Working as a hospice nurse years later, one of my patients was a 96-year-old woman with end-stage dementia. We’ll call her Clara. She had been cared for by two of her seven children. She had a very large wound as a result of extended bed rest and she was totally dependent for all of her activities of daily living.
Unfortunately, Clara never talked with her children about her end of life care and now dementia made it impossible. As with many families, caring for an aging parent usually falls to one or two children who make significant sacrifices. They perform every act of care including physical care which can be very taxing.
When Clara was in hospice, the children who never contributed to her care arrived and began challenging decisions. This resulted in verbal altercations which escalated. Family meetings were arranged and some of the members were banned from the hospice house.
This sweet, helpless woman overheard the chaos. How could Clara have peace in this atmosphere? When this lovely woman died, there was so much arguing and turmoil that the police were called.
There is no single answer to prevent this type of situation because people come to situations with their personal baggage. However, if Clara had talked with her children before she became ill, it may have made a difference. If she had a conversation with her doctor and created an Advanced Directive and a MOLST (Maryland Order for Life-Sustaining Treatment), the daughters who cared for her would’ve known what to do and had legal support for their decisions.
Tell your story
These stories are at opposite ends of the spectrum. The common denominator is communication. It’s important to tell your story so that your loved ones know what you want. You can name a person to make decisions when you no longer can. You get to decide what’s important and ensure that the end of your life reflects how you lived.
Our lives are a journey to our death. There is a beginning, a middle, and an end. Along the way, we prepare for everything, from the food we eat to the clothes we wear, the school we go to, the job we take, where we vacation, whether we marry or remain single, who gets our money and possessions … everything but how we want to die.
We are all going to die. Pre-COVID-19, it was fairly easy to forget our own mortality until it was too late. This pandemic has brought the fear that surrounds death out into the open. People are confronted with it every day and it is forcing them to think and talk about it. Fear is not one-dimensional. It is not just fear of death. There is fear of the unknown, fear of pain, fear of letting someone down, fear of unresolved conflicts, fear of saying goodbye, and fear of dying alone.
Education usually helps to assuage fear. When something is understood there is a sense of control. Take the time now to have important conversations with the people who will carry out your end of life wishes. It will help you and is a very thoughtful gift for them.❖
Coming up in part two: Why it’s difficult to talk about death and plan the end of life plus documents to make the process easier.
Dot Mayorga has been a nurse over 20 years serving the residents in Caroline, Dorchester, Talbot and Queen Aanes counties. She has worked as a medical- surgical nurse in Easton Memorial Hospital, a case manager Home Health, Hospice nurse with Shore Health, and Wound Care nurse with Shore Regional Health System. She currently is a triage nurse with Choptank Community Health Services.