A day to carry with me forever
I’m watching my hospice patient die, in his bed. Above him on the wall hangs his wedding photo; in his hand are sacred images and a rosary wrapped tightly. I bet on his wedding day, he never thought that many years later lung disease would claim his life. Not for one moment did he think he’d be here – dying much earlier than the long life he planned to live – with his wife at his bedside, broken and keeping vigil. My heart is heavy as it observes the beginning and end of their journey together.
As the nurse appointed to manage his pain, I am privy to the all-too-intimate moments of life at its end. All that is left in this room is love. I’m wrapped up in it, pulled and compelled by it. It’s in all the details: the many, many family members here, how gently and lovingly they talk to and touch their loved one, the music – the patient’s favorite, of course – and even how family members adjust his clothing and position to make sure he is comfortable.
The Bible and rosary have accompanied him since he was in the Medical Intensive Care Unit (MICU) a week ago. It was there that the family was told there were no more resources to help improve his condition. His lung disease was so advanced that he needed to be intubated or breathe with the help of a tube and ventilator, in order to stay alive. He would be heavily medicated so as to not feel the tube, and would not have the chance to talk ever again.
The family decided it was time to move forward with the patient’s last wish – to die at home surrounded by loved ones.
This decision initiated an enormous collaborative effort between the MICU team, nursing staff, the resident and patient’s attending physician, pharmacy staff, and the attention of Palliative Care. The care team had the challenge of determining the best care to give the patient leading up to discharge. A North Memorial transport team and Hennepin Healthcare Hospice would take over upon discharge. Figuring out logistics, the expense of transportation, comfort care IV medications, and a plan of care from hospital to home would take a week.
Finally, the patient arrived home, the rosary still within his grasp. He is extubated and breathing on his own. He lays in a bed he had specifically purchased for this occasion. I along with dozens of family members keep vigil. Many say goodbye at his bedside and, many say goodbye from a distance. This time of waiting stretches into one, two, three hours before he passes peacefully.
As I go through my responsibilities, I am reminded of why I work in hospice. Hospice treats death as a normal part of life, giving it the respect and time it deserves. Yes, it is an incredibly sad time, but it’s often a time when the most valuable moments, desires, and wishes in your life take center stage. How will you spend your time? Who will you spend it with? What makes you most happy? It’s often in these final moments that you live life to the fullest. This is the kind of decisive confidence and peace we all hope to have at the end of our lives.
Sigh. It’s been a hard day but one that I will carry with me forever. I make note of everything I want to do – give my children hugs, call my parents, take a slow walk where each and every step will send gratitude out into the universe. Gratitude for life, for breath, for love, for people who come together during difficult times to support life, including end of life.
Thank you so much for sharing your experience and insights! Hospice work is sacred and awesome but difficult work. It’s amazing but not surprising the team effort it takes to allow someone to pass in their preferred way. Thank you so very much for what you do.