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Every Death is Different
By Amanda M. Bow
I have been a part of the hospice community for seven years – first, working with two hospice providers and now the national association for hospice and palliative care. While my work in hospice has focused on administration, I have learned so much about death, dying and individual end-of-life experiences. I have had the privilege of meeting and interviewing many hospice patients and families. These interactions, coupled with my own personal experiences with hospice, have helped shape my perception about death. The only constant is that each experience is different.
Hospice cares for the whole person, addressing all aspects and challenges that come with a terminal diagnoses. This is the cornerstone of hospice care. While those who work in the field help each patient die peacefully, we must acknowledge that there are in fact both “good” and “bad” deaths. In truth, providing hospice care can be very challenging. As I reflect back on my own personal experiences with hospice, I can now see these differences and have recognized just how complicated dying can be.
Nana-I was eleven years old when my mother told me that my ailing grandmother, or Nana to me, wasn't going to get better. This woman, who was like a second mother to me, was dying. She had been in and out of the hospital for months. Her breast cancer had metastasized and there was nothing more doctors could do to prolong her life. At this point, it was about quality of life. She wanted to go home to the place she had raised her family. She wanted to be surrounded by all of her loved ones –her sisters, children, grandchildren, great-grandchildren and friends. Thankfully, her doctor suggested hospice.
My grandmother's home, the place where I spent the majority of my early childhood, was where she would spend her final month of life. My first memory during that time was walking into the living room and seeing Nana in her hospital bed. I remember thinking how strange it was to have a hospital bed in the middle of the living room. This room, an area I had played in countless times and the place where family had always celebrated, had now become a sacred space where we would gather around Nana to care for and support her.
Although much of her last month is now a blur, some memories still remain. Family, friends and even priests would come in and out of her home on an almost daily basis. We gathered for Easter dinner – it would be our last holiday celebration with her. Her sisters prayed and said the rosary with her as she lay in bed. She was able to hold my 1-month- old cousin.
I spent a lot of time with her but never fully grasped the situation or what was to come. I know now that it was so vital that these events occurred. These are her final moments and memories that my family will cherish. Nana’s last month alive would have looked so differently had she been in the hospital.
Behind-the-scenes, something else was going on. A hospice nurse, Alice Ballard, was providing Nana with the care and support she needed. She would make her nursing visits on a regular basis, continuously updating the family on Nana's condition. Her visits went unnoticed by my 11-year-old eyes because she blended in to the entire scene so well. She did her job with a quiet grace and dignity.
Alice, who was in her 70’s when she cared for Nana, is the perfect example of what it takes to be a hospice nurse. She was one of the founding mothers of the hospice she worked for and had made it her mission to bring hospice to our region. Her presence gave us a feeling of security and catharsis during the most difficult of times. My family knew Alice from her time working at the local hospital. She had a reputation of being a fantastic nurse with endless compassion. Nana was in good hands. Even though Alice was being paid for her time, I know she viewed her work as a calling, not a job. In fact, well into her 80’s, she still cared for patients as a hospice volunteer.
On the last day of Nana’s life, a priest came to perform Last Rites. We gathered around in the living room as he performed the final Sacrament. It was in this moment that the reality of the situation hit me. I began to sob. My nose began to bleed profusely, most likely brought on by the stress I was feeling. The sadness and confusion of the situation came out in an emotional burst I could not control.
Soon it was time for each grandchild to say goodbye. After composing myself as best I could at 11 years old, I remember walking up to her bed and kissing her on the forehead. That was the last contact I had with her.
After each grandchild present said their goodbyes, we were whisked off to my house. Nana's children sat with her through the night to ease her into this final transition of life. She had seen them into the world; they would see her out. Before she passed away, she opened her eyes one last time and looked at each one of her six children, then took her last breath.
My grandmother was fortunate. She had a “good” death. Although there were times when she was in pain, Alice and the other hospice nurses would assess the situation and make her comfortable. The nurses would work with my family to make sure they understood what was going on and offered reassurance and support when it was needed. Hospice made it possible for Nana to be at home, surrounded by those she loved and cherished. I can't think of a better way for her to live her final days.
This entire experience left quite an impression on me. At my young age, I knew that hospice was for people who were dying but didn't fully appreciate it. At the time, I wasn’t aware just how much was actually going on. There was a team of clinicians that were focusing on managing her physical pain and attending to the emotional pain that my family was feeling. The medical director of the hospice also did his best to calm my family’s concerns about her pain level (a particular concern of my mother’s).
It took years for me to realize how important hospice had been for Nana and my family.
One evening in 2011, I received frightening news from one of my cousins. My Uncle Leland, who was 68 years old, was being transported via ambulance to a larger hospital two hours away from his home. After struggling with pulmonary fibrosis for several years, the disease had finally rendered him unable to breathe. My mother and her brothers were at the hospital saying “goodbye” to him because doctors feared that he wouldn't survive the ambulance ride. Immediately following his arrival at the hospital, he was put on a ventilator. Doctors told my aunt that they were skeptical he would recover. But he surprised us all.
The only way Uncle Leland could return home was by enrolling in hospice. Determined that he would never be put on a ventilator again, he signed a DNR order and elected his Medicare hospice benefit. The hospice that was charged with his care was the same hospice that cared for his mother, my Nana, 20 years earlier.
I tried to comfort my mother and other family members and assure them that this was the best possible care he could get at the time. Looking back now, I think that many of my family members, including my uncle, were in denial about the finality of it all. It was hard to imagine that a man who was so full of life could be gone from the world in a matter of days or months.
Each terminal diagnosis comes with its own unique challenges and sometimes ugly characteristics. My clinical colleagues prepared me for what my Uncle Leland’s end-of-life experience could look like. I was told that with pulmonary fibrosis, the struggle to breathe becomes increasingly worse right up until the final moments. Patients feel like they can’t catch their breath, which causes a tremendous amount of anxiety. Coughing and fatigue are also symptoms. Towards the end of the dying process, heavy sedation is sometimes used to keep patients comfortable.
Breathing had become difficult for Uncle Leland and he was accustomed to having an oxygen tank following him everywhere he went. He was admitted to hospice in December and he informed everyone that he still had living to do. He was determined to go to the casino one last time and his nurses were optimistic that they could help make it happen. Unfortunately, he never made the outing. In fact, he never left the house after he was admitted because it was impossible for him to catch his breath after the slightest amount of exertion. His home, which had been the setting for so many joyful family gatherings, would be where he would spend his final days.
Hospice staff provided the support and care my uncle needed while he tried to live in a way that closely resembled what his life used to be like. He grew close to his LPN, trusting him more and more each day. Uncle Leland loved to bake bread. Using the old family recipe he decided to make bread for the Christmas Eve gathering that would happen at his home. It was something he enjoyed so much that the excitement left him breathless and drained his energy level to the point of complete exhaustion. It was obvious to all that while he was determined to live, his body was fighting him every step of the way.
The holiday season was particularly important to him. Christmas Eve night was one of the most memorable moments of my life. It was a night filled with family, laughter, great sadness, and goodbyes. Uncle Leland was having a particularly rough day. He was seated in his recliner in the den with his oxygen on. Family would gather around him at various points throughout the evening to chat and reminisce. It was apparent that he was struggling, so the on-call nurse was paged to come by and check on him. The nurse came in and did her job amidst the hustle and bustle of the gathering that was going on in the background. Some might wonder why the family had this gathering given Uncle Leland's condition. It seemed simple to me - it was what he wanted. It was his party. And honoring his wish was possible because he was home and on hospice care. This type of celebration could not have occurred in a hospital setting.
When my mother and I got up to leave and say our Merry Christmases and goodbyes, Uncle Leland grabbed our arms and gave us each a kiss. He then said “Happy New Year”. At the time we thought it a peculiar thing to say since we thought we would see him the following week. But after Christmas, Uncle Leland began to decline.
Each day became more difficult than the previous. Walking only a few steps left him breathless. Days before New Year's Eve, he asked the hospice nurse he had come to trust and respect, if tomorrow would be more difficult than today. The nurse was honest with him about the usual progression of this terrible disease and that the days ahead would likely be more difficult.
Although I knew my uncle was dying, I was not prepared for the phone call I received on New Year’s Eve day, informing me of his death. My family and I were all shocked. Yes, he had been declining. Yes, he had been struggling more and more each day, but he was not at 'that' point yet. The confusion only increased after I walked into my uncle’s home less than an hour after that phone call, to find my aunt and other family members struggling to grasp the situation. The question “what happened?” was directed at my aunt several times. It seems like a silly question now because we all knew Uncle Leland was dying. He was on hospice care; ultimately, there was only one ending to this story.
So why were we puzzled by what was naturally supposed to happen? Perhaps it’s because it didn’t seem fair. Here was a man who wanted to live. He hadn’t accepted his fate until the very end. And none of us accepted his fate until he was gone.
With Nana, we had time to adjust to what was going on. In a way, we were more prepared for the final outcome because she had transitioned into her last few days in such a peaceful and calm way. We knew she wasn’t going to sit upright and start having a conversation. Unlike my grandmother, Uncle Leland didn't have a peaceful death; he struggled to breath until his final moments.
My mother and I have talked about Uncle Leland’s death several times in the years since he passed. We both feel that he willed himself to die. He knew that each day was getting worse, that each breath was more difficult than the last. We now know why he said “Happy New Year” to us a week before. The man who was the life of the party left this world on one of the biggest party days of the year. Many of us still toast to his memory every December 31st.
Both of these end-of-life experiences were clearly different. But perhaps it isn’t that there are “good” and “bad” deaths. Some deaths are more complicated than others. In hospice we see patients die in peace like Nana or struggle until the very end like Uncle Leland. Symptoms – physical and emotional – vary because of the different terminal diagnoses. The goal of hospice is to provide quality and compassionate care during one of life’s most precious times to help minimize the complications and allow the patient a meaningful and dignified transition.
I’m grateful that hospice was there to help both my grandmother and uncle so that they could live their remaining days as best they could.
Amanda Bow is an employee of NHPCO
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