I listen to her describe the drive into the foothills. The roads twist like curlicue ribbons on a Christmas gift. The addresses are inconsistent, with some numbers faded into invisibility on mailboxes and others haphazardly scrawled on the sides of fences. Every patient’s house can seem like a missing puzzle piece in the isolated foothills east of Fresno. On most days, her GPS will lie to her about directions at least once before she returns to the hospice office. She rarely has a chance for that lunch break she’s required to take. At one front door of a patient, who lives in mobile home with more rust than paint, she is welcomed like the Queen of Sheba. At the next stop, a 10,000-square-foot cabin on steroids built by wealthy retirees, she’s treated like a despised servant.
I listen to him describe the non-compliant patient and caregiver. At every visit, the patient complains about an upset stomach or a pain that feels like a knife in the side. Did you take the pill every four hours like I told you? The patient shrugs. Did you give that dose before meals like we asked you to? The caregiver mutters maybe. And so he again explains about correct dosages and regularly giving the pain meds even when the pain is minimal. Before he leaves, they thank him profusely and promise to do better. He reminds them they can call hospice any time, twenty-four hours a day. They promise they will. They tell him how much they appreciate him. Three days later, on his second visit of the week, the first words the patient says are, “My stomach is upset again . . .”
She is a hospice nurse. He is a hospice nurse.
I have the deepest respect for them, and for all of the nurses I have worked with in the years I’ve been part of hospices. A car is their office. After all, 66% of the 1.6 million hospice patients served in 2013 were living in their homes. A nurse will make two, three, and even four visits to patient’s residence per day. They arrive in bedrooms and living rooms and provide right-here-and-now medical expertise. Most nurses I’ve known will go out of their way to ensure a patient with a terminal illness is as comfortable as possible. Many visits are for an hour or so, but I frequently overhear nurses sharing about visits lasting three or four hours. And should I mention all the charting they are required to do?
Along with being the resident “medical expert” for a patient and family, they are cheerleaders, teachers, consolers, and arbitrators. They boost a patient’s morale. They explain what a prescription does and how often to take it. They have patients literally lean against their shoulders as fear or anxiety is expressed. They help angry siblings find common ground while a parent suffers in silence. Some of the most hate-filled words have been said to nurses by the patient’s belligerent sister-in-law from out of town whose token appearance upsets everyone. Some of the most loving words have been said to nurses by caregivers, who never thought they could truly help a loved one have a peaceful death . . . until the nurse made that possible.
Nurses are underpaid, overworked, under appreciated, and an absolutely essential part of the hospice team.
And oh, the tales they tell . . .
Nurse: “Can I give you a hug?”
Patient: “Only if you have to.”
Every patient is different. And there was that one who seemed upset at, well, everyone! Leave me alone! Don’t touch me! But now she was dying. She was afraid and isolated and no one—not friends, not family—visited. The only people around her were hired caregivers and the hospice team (and they were paid by Medicare benefits). At first, like the patient did with everyone, she complained about new drugs or dosage changes. And then one day, because often it’s not medicine that matters most, the nurse asked about giving the patient a hug.
The patient shuddered. Only if you have to.
At every visit, the nurse politely asked about a hug. And finally, with death close, there was no need to ask. A hug became the best part of the visit.
Patient: “When am I going to die?”
Nurse: “Why are you in such a hurry?”
Patients and families always ask the impossible questions. How can they not? And, no surprise, one of the most common questions is . . . how much time do I have left? And the nurse, who knows about pain meds and has suggestions for the best ways to sleep or eat or take a crap, will try to provide an answer.
Why are you in such a hurry . . . to die? Because, you see, the nurse is there—and I have chatted with scores of hospice nurses over the years—to help each and every patient live. A hospice nurse, like most normal stubborn, wonderful, wounded humans, knows dying some day is inevitable, but living today is always the best choice. They want to help each patient have the best possible life. They want to help each caregiver feel like they have done their best in supporting a loved one.
Yeah . . . I love nurses. They drive lonely roads into the foothills, all by themselves, with a singular goal in mind: to help the next patient. They enter the wealthiest and poorest of homes, treating patients equally and professionally.
And sometimes they “dispense” a hug.
(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.)by