In the early morning, before the hospice team meeting began and the patient care reports became formal, two nurses discussed a new 23-year-old patient.
When admitted into our hospice, this young patient had a Palliative Performance Scale (PPS) score of 60%. Her PPS* percentage meant she could easily get around her home and required minimal assistance for most daily activities. Compared to many patients, she was remarkably independent.
Less than two days later, she was in crisis.
Pain had suddenly wracked her body, and it took hours of intensive work for nurses to get her comfortable. She was in her twenties. She was strong. Her cancer was terrifying, but if—the nurses hoped—she could settle down, have her pain reduced, and get some sleep, then maybe . . .
How could someone active, and able to talk and share and wonder what the next meal or who the next visitor might be, die so quickly? The family and hospice staff that cared for the vibrant young woman was crushed.
I recall joining with a nurse to visit a patient when I was a hospice chaplain in the late 90s. The nurse warned me it would be grim. The 50-something woman required daily wound care for the tumors growing outside her body. The fetid odor of decay permeated her bedroom. While the nurse tended to her body, I held the patient’s hand. I talked with her, prayed with her, and shared smiles with her. Grimacing at times, she told stories about the summer camp in the mountains her family had started. For young Christians, she said. For children who deserved a place to play, she said. Maybe I can go there one more time, she said. I so enjoyed helping those kids, she said. Given her cancer’s severity, I encouraged her to have realistic expectations . . . but encourage her I did.
I didn’t start crying until the nurse and I were outside, on the way back to the car to visit another patient. The woman died less than a week later. She never left her bedroom in those last days as the gruesome, opportunistic cancer overwhelmed her body.
One of our prior medical directors was soft-spoken, but I recall her voice lowering even further when she told about 70-year-old Jake**. He’d lived much of his adult life on the streets. Then Jake got sick. Bad sick. A brother, who Jake hadn’t communicated with for years, welcomed him into his home. However, the tiny house was floor-to-ceiling with junk. Spider webs owned every corner, and dust layered the battered and broken furniture. There was no air-conditioning, which was not a good thing during a Fresno, California summer. Among Jake’s many ailments, he had COPD, a respiratory problem. When fans were brought to cool the hotbox of a room where Jake lay, decades of dust and generations of spider webs assaulted the dying man’s weakened lungs.
The brother’s help was adding to Jake’s misery.
The doctor moved mountains to get Jake into our inpatient hospice home . . . now! That evening Jake had his first bath in months and his first spoonful of food in days. His pain was diminished, his lungs breathed clean air. The doctor felt confident Jake’s final weeks would be in this safe, serene, comfortable place. Once, before midnight on that first day, Jake’s eyes fluttered open after a little nap. Several nurses were tending to him.
“Hey, am I in heaven?” Jake asked with a wink and a smile.
The nurses laughed. He chuckled.
Jake died the next day.
The medical director, she of the soft voice and quick actions, was stunned. She expected Jake to live for days, even weeks. She expected him to have a chance to breath easily, spend meaningful time with his brother, and joke more with the nurses.
She’d done everything possible to help him. How could death have so easily “won?” The hospice physician was crushed.
One of the nurses that briefly cared for Jake shared a comment the doctor has never forgotten: Patients are not there to make you happy.
In hospice (hey, in my daily life) I want everyone to be happy. When I make bereavement phone calls, I want the person answering to feel better . . . stronger . . . supported . . . before I say goodbye. Won’t there be a “perfect” response that will make a real here-and-now difference for the one grieving?
And yet . . .
How could that 23-year-old woman die when her body remained so strong? How could that woman, who deserved a few minutes outside her room, let alone a last trip to the mountains, die in a foul-smelling bedroom? How could a doctor make every right decision and still Jake—though squeaky clean and with home-cooked soup in his belly—die before a next sunset?
Every day a hospice doctor or chaplain or home health aide will be unhappy. A nurse will cry. A social worker will feel demoralized. A volunteer will leave a patient’s home filled with frustration. A family that usually bickers will rally together and make the hard, good choices for their loved one, and then he or she abruptly dies. Everyone has done everything to give a patient another meal, another visit, another chance for conversation, another sunrise and sunset. But it didn’t happen.
I hope, when considering the calls and visits I’ve made, that I remember it’s not about making me happy, but doing as much as I can to share a moment of life with another.
Every contact with a hospice patient is a wound, and a blessing.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)
* See chart below for version of a PPS scale – “borrowed” from Visiting Nurse Service of New York. It is one of many examples of how the PPS score helps a hospice agency determine the current and continuing status of a patient.
**Not his real name or age. Jake was a man, though. I don’t want to lie about everything.
Photo from nursebuff.com.by