End of Life: Professional Insight, Personal Experience, a Better Way
Nothing can fully prepare us for the death of a loved one — even those of us who work professionally in the hospice field. We can bring a stepwise understanding to the process, including insight into what might ease the journey and resources to help manage what is in our control, but one thing we know: when it comes to mortality and end of life, much indeed is out of our control.
My colleague Michelle Drayton, Visiting Nurse Service of New York Hospice Director of Community Outreach, experienced this firsthand in the last year. Her moving account of her own struggle to balance professional hospice expertise with the personal realities of losing her beloved mother is a story we can all learn from. Michelle’s insights as a professional working to increase access to hospice care throughout New York, especially for people of color, and her experience as a daughter, a sister and a caretaker, paint a very real picture of the challenge we are up against in helping our communities and our physician and clinical colleagues understand the healing role that hospice can play.
Here is Michelle’s story:
It was a bright, sunny December day with an icy chill in the air when I got the phone call. My mother, Elizabeth Carolina Drayton, was having difficulty breathing, and the hospital critical care team planned to intubate her. I asked more about her condition, then I made a decision. “No,” I said to the physician assistant on the phone. “Don’t intubate.” I turned my car around on Manhattan’s Henry Hudson Parkway and headed to Queens. My optimism for my mother’s condition the day after her gallbladder surgery had been replaced by despair.
From my five years in hospice work, I know how crucial it is to understand and honor a person’s wishes at the end of life. I walked as fast as I could to the ICU, found my mother in her room, and learned more about her condition, her oxygen levels and respiration. She was battling against fluid overload and was short of breath, but the urgent need for intubation was not apparent. I knew I had to ask her the difficult question, in a straightforward and loving way: whether she wanted to be intubated or resuscitated, should it come to that. “Absolutely not,” she said instantly. “And I don’t want to be on a respirator. Michelle, you and Pam make sure that I’m buried at Woodlawn next to my mother.”
I quickly replied that we would, but I insisted that she would be fine. We would get past this, I told myself, because we had so much more to do. Our daily conversations, upcoming adventures, travel to Italy and Paris. She was so vibrant and alive to me, even in the ICU, a Renaissance woman who raised three children, worked two jobs, and gave back through her civic duties at the polls. She had what my sister called a “beautiful mind,” with a memory like an elephant, and could outsmart her children at every turn. She marched on Washington in the 1960s with her father and lived to celebrate the election of America’s first African American president in Barack Obama.
With my mother’s vivid life constantly on my mind, I nevertheless made sure I completed a MOLST (Medical Orders for Life-Sustaining Treatment) directive, an important medical order that expresses what the patient and family want done at end of life — in this case, no intubation. Even though the directive was clear, we still had to advocate for my mother over her next three weeks in the hospital to make sure her wishes were followed. Her oxygenation had improved, but the physicians, many of whom were residents, kept recommending intubation whenever her oxygenation decreased to levels below normal. We, however, insisted on treatment with medications and nebulizers. (Unfortunately, none of the medical team revealed to us that my mother had a collapsed lung, which we later discovered from her medical records.)
The medical odyssey first began when she had an open cholecystectomy to remove her gallbladder. Having won several surgical battles already, including back surgery and treatment for Stage 1 breast cancer procedure, my mother faced this recovery like she faced all else in her life — as a warrior queen, even refusing to use the patient-controlled morphine pump for pain relief following her extensive surgery. Right after surgery, she was awake, alert and optimistic about her outcome. My sisters and I were amazed at her strength and resilience. Working with a social worker at our mother’s bedside, my sister, Pandora, and I made plans for her to be transferred to a rehabilitation facility upon discharge.
But, as often happens at the end of life, things did not go according to plan. She faced a series of life-threatening post-operative complications, including pulmonary difficulties, infection and the discovery of stomach cancer. For three days, my sisters and I were by her side. Valerie, my middle sister, flew in from New Mexico and rarely left her bedside.
After a week of care in the ICU, my mother was stable enough to be transferred back to a medical floor. For the next three weeks, she experienced a roller-coaster of fluid overload, infection and shortness of breath. We visited daily and planned for her to come to my home. From my work in hospice, I know the power of being at home in one’s final weeks, surrounded by familiar things, where family can come and go, can settle in for long conversations or no conversation at all. I had turned my family’s guest bedroom into a hospital room complete with oxygen, and my sisters and I continued to work with the hospital social workers to put home care services in place.
On discharge day, ambulance drivers were already in her room when a nurse informed my sister, who had dressed mom and packed her things, that my mother was not medically stable. My mother’s white blood cells had risen, signaling that infection was still present. Her discharge was cancelled. That Sunday, extended family came to visit and be by her side. Her sister, Lucille, her lifelong soulmate, sat at the edge of my mother’s hospital bed. I watched as they held each other’s hands, consoling one another with gentle loving strokes. They looked into each other’s eyes and communicated in silence.
Mom died two days later, with my sister, Pandora, and me at her side in the ICU. We watched as my mother’s heart rate slowed. I know from experience how deeply present people can be at the end of life, and how important connection is in those final moments. I held her hand and whispered how much I loved her. A tear ran down my mother’s face. I know that she — with her beautiful mind — was right there with us. Her heart slowed, and she was gone.
Like millions of Americans — 60 percent of all deaths — Michelle’s mother died in the hospital. And like so many, this was not how she or her family would have preferred it. Despite their best efforts, the opportunity Michelle’s mother had to die at home was halted not only because of an infection, but because everyone thought there was more time to talk about death — to “have the conversation.” Even when hospice or palliative care is introduced into the plan of care, a study in the Journal of the America Medical Association shows that 28 percent of hospice users are enrolled for three days or less, and that 40 percent of these late hospice referrals were in the ICU prior to entering hospice.
We need to do better than this.
Michelle’s heartfelt story reflects one of most painful and persistent challenges those of us who work in hospice care face each day. Simply put, we must all find a way to talk more openly and honestly with about what is happening and what a patient’s prognosis is — before those last critical moments, when decisions are often made reactively and very quickly.
Michelle and her family had been told by a physician that their mother likely had about six months to live, but at no point during her mother’s care was there a discussion about how those last few months would go. Even with the very clear advance directives that Michelle’s mother had communicated, the family felt pressured by the hospital to take aggressive action, which they knew their mother did not want — and, of course, the idea of palliative care was never introduced.
The under-utilization of hospice care is particularly problematic in New York State, which ranks 47th out of 50 states in hospice use, and among African Americans and Hispanic Americans (nationwide, nearly 83 percent of hospice patients are white). Michelle directs a VNSNY community outreach initiative called Project HOPE, which seeks to raise awareness about the benefits of hospice care among residents and healthcare professionals in the Harlem neighborhood and connect people with this care. For Michelle, the irony is difficult to swallow.
Sometimes, the most difficult challenge for the loved ones of a patient nearing the end of life is getting doctors to listen to what the dying person wants. A bad prognosis doesn’t mean that aggressive treatment involving pain and suffering is the only solution. Most patients don’t know that, because it’s easier for a doctor to deliver a message of hope, and it’s easier for patients and loved ones not to ask the hard questions. Even those of us who know firsthand the benefits of home care — especially hospice — struggle to recognize and navigate the path.
Through the community outreach work that Michelle does with Project Hope, and other innovative programs at VNSNY Hospice and Palliative Care such as the Physician Fellowship Training Program, progress is being made. And that’s the bright spot in this story. As Michelle has seen in both her professional and personal experience, “the life force of a loved one is eternal. I feel my mother’s presence every day, a queen mother with a magnetic personality and captivating green eyes. All that I learned from the life and death of my mother, I will now bring to my work caring for others at the end of life — so the learning comes full circle.”
I’m grateful to Michelle for sharing her story, and would love to hear from others about their own experiences with hospice or end-of-life care.