Written by: Karen Flynn, RN
Retired Director of Hospice and Palliative Care at Androscoggin
I can still vividly recall my first hospice patient.
She was an unfortunate woman in her early fifties who was living with end stage liver disease and lifelong mental illness. Though she struggled all her life, this remarkable woman worked in the local mills and raised a son and a daughter. When I met her, this once large robust woman was now frail, weak and often in pain. Her schizophrenia was well managed except for one fixed delusion that compelled her to attempt to walk to the state hospital and go into the underground tunnels at that institution, believing that if she did not, her beloved grandson would come to harm. More than once I passed her trudging up route 202 painfully, motivated by love for a child and the relentless twist in judgement brought on by her disease. Of course, I would either put her into my car or notify the police for assistance and she would comply and return to her apartment. Though I was there to guide her, it was really she who guided me. Her stories of hardship were moving and informative; tales of perseverance and heartache which never diminished her ability to love and to have faith that people matter to each other. Though this story is well over 20 years past, the memory continues to be inspiring and a source of direction on how to live fully even during challenging times.
How does one capture the essence of working with dying patients?
Hospice has many components, a philosophy of care, a body of clinical skills and knowledge and a federal operational/reimbursement structure to pay for the delivery of the service. I could note the massive amount of regulatory, structural, operational changes that have evolved in the world of hospice.
We moved from reliance on a morning call to arrange a visit with a patient, on a desk phone shared by four clinicians, to emails and texts and computerized scheduling programs. We maintained communication by carrying a pager that only gave a call back number and required a telephone booth that was operable to respond, to smart phones that communicate in multiple ways. I could go on dating myself with this timeline of change, but I find myself drawn to this truth; there is a deeply rooted set of values and behaviors in the hospice world. That does not change. Great hospice programs will always require skilled clinicians well trained to manage all types of end stage diseases, effective operational structures and inspired and creative leadership.
Inspired hospice clinicians, aides and volunteers carry the mission of the heart of hospice, where what matters most resides.
The core identity and value of providing great hospice care has more to do with elevating the importance of the patient’s experience, knowing that at the end of life there are no do-overs. The passion that I and others experience for providing care at end of life results from the opportunity to enter a relationship with another person at such an important time in their life. To participate and witness their experience is impactful and influences our own personal beliefs and philosophy about how to live and how to die. Few would disagree that we are changed by working in hospice.
Thirty years later, I can get lost in my memories of my patients, their heroic families and loyal friends. Some stories I keep to myself, but most stories offer lessons, guidance and inspiration, which become valuable tools when communicating inside and outside the world of hospice. She was too young to be facing the end of her life, but cancer does not discriminate by age and young people are not immune from life limiting disease.
Her primary nurse was worried. The patient was growing more withdrawn, eating less and not interacting with her family. As the mental health nurse on the Hospice team, I was asked to make a visit to assess her mental status, provide supportive counseling, and possibly to recommend an antidepressant medication. While preparing to meet this young woman, I became aware that I was anxious about working with someone so young. How do you support a young person who is dying? Who wouldn’t be sad and depressed? What a lovely woman she was – smart, sensitive, and clearly grieving the impending loss of her life as she grew sicker and weaker. I asked the typical questions about mood, energy level, appetite, and sleep. Mentioning sleep lead to a conversation about dreams. This is when this beautiful woman became my teacher. She told me that she experienced three types of dreams.
The first type, she explained, was when her pain worsened and the team had to increase her IV morphine. She described those dreams as chaotic, colorful and loud, but she knew they would subside as she adapted to the change in the medication dose.
The second type of dream was described as pleasant and welcomed. She told me that she would fall asleep and become aware of a large leather bound book that was opening to her. Each page in the book contained one of her childhood memories. She explained that the experience was vivid, like she was there. She could feel the cool springtime air. She could smell the river as she was fishing with her father and hear the dogs barking. She smiled and shared that she looked forward to those dreams because it reminded her of her blessings and though she wouldn’t live as long as she would like, her years had been full of life.
Then she became solemn and appeared reluctant to share information about the third type of dream. She told me she wasn’t sure if it was an actual dream because she never remembered falling asleep. Twice she said, she turned to find her aunt sitting at the end of her bed. Her aunt had been killed in a motorcycle accident two years prior. I was intrigued by her story and asked her if the experience was distressing. She told me that it was comforting and that her aunt promised her that she would not die alone and that she would be reunited with people and animals she loved.
I was fascinated by her experience and quite sure that there was no appropriate mental health diagnosis that fit this situation. I felt certain that she was not crazy or even depressed and told her so. I assessed this patient utilizing an entirely different clinical lens and my practice shifted forever, to include the metaphysical and spiritual experiences of patients as valid and important. This patient was and will always be one of my greatest teachers. I visited her again one week later as she lay actively dying and whispered into her ear words of admiration, support and farewell. I have shared her story many times with others who are learning the art of hospice. Her story and lessons live on and have brought comfort and an invitation to maintain curiosity and an open mind when sharing the journey at end of life.
Like all Hospice clinicians, I am proud to have gained the clinical skills to manage disease progression, pain and distressing symptoms, and to maintain comfort and dignity for our patients at end of life. Thirty years of hospice practice and hundreds of patients cared for over those years, I continue to be impacted by the wisdom generated by their stories and the lessons attached to those stories. No university course, no advanced degree could have provided this form of education and inspiration about what it means to live and what it means to die.
I have acquired a profound sense of awe regarding this human journey. I have gained interpersonal skills that serve me well in creating meaningful and healthy relationships with others and I am mindful that vulnerability and trust are the foundation for true intimacy between people. I once counted every house I had visited to provide hospice care as I was driving from Rumford to Bowdoin where I live. I lost count at forty-seven because each residence sparked a memory, a story of another human being and a lesson I would incorporate into how I live my own life and how I will face the end of my life.
Perhaps it is captured best by the words on a wall hanging that I moved from my office to my home when I retired.
In the end, what matters most is:
How well did I live?
How well did I love?
How well did I learn to let go?
I will forever be grateful for the stories, the lessons and the final gifts.