There are days, and then there are days to remember. Palliative care tries to relieve suffering, but we can't know in advance what kind of suffering we'll run into. Here's what yesterday looked like for our team:
Susan is a woman in her early forties who looked older and has had a life marked by misery -- intestinal problems, bladder problems, pain all over from fibromyalgia, money problems, and family problems. She used to work as a manager but now is receiving disability. A few months ago she had a nasty cancer that began inside her ear. She had surgery, but she was left with stabbing pain above and behind the ear that radiated down into the back of her neck. When the pain got worse, she worried about the cancer coming back and consulted an oncologist. Tests showed no evidence of recurrence, the oncologist tried unsuccessfully to get the pain under control, and Susan eventually was admitted to the hospital with pneumonia. We made some medication adjustments, and I found that pushing on her occipital nerve (it comes out in the back of the neck just below the skull) reproduced much of her ear pain. (There's a branch of the nerve that goes right behind the ear.) I did a nerve block by injecting some local anesthetic. She felt significant relief within minutes. Then we had a long talk about fibromyalgia, about how exercise was the only effective treatment, and how she had to overcome her fear and begin to move again. She promised to try.
Claudia, who describes herself as a simple country woman, was admitted a few days ago with abdominal pain. The diagnosis of stage 4 colon cancer was quickly made, and her pain was easily controlled, first with intravenous morphine and then with the equivalent oral dose. She was calm and sanguine about her limited life expectancy, and her family seemed equally at peace. This morning I was called urgently to the bedside. She was hallucinating and seemed to be having a panic attack. And she was panicky indeed, saying, "I'm afraid I'm losing my mind!" Yesterday, it seems, she'd "seen" her teenaged grandson at the foot of her bed. He died three years ago. This morning she didn't see him, but she distinctly heard his voice saying, "It's okay, Grandma." In medical terms these are straightforward hallucinations and ordinarily would prompt the use of strong tranquilizers and maybe the discontinuation of pain medication. But for those of us who care for patients late in life, there's another explanation for Claudia's experience. It's called nearing death awareness, a common event among those who are gravely ill. Patients often report visitations from the dead, and they sometimes speak in travel metaphors -- "the train is leaving soon, and I'm afraid I'll miss it," that sort of thing. We pulled all the visiting family members into Claudia's room and talk about nearing death awareness. She became more calm. Her brother said he'd had similar experiences after their mother had died; she had visited him, he said, and he embraced the experience. Claudia and her family accepted this explanation, she declined my offer of a sedative if she was still feeling shaky, her pain medicine continued, and soon thereafter she and her visitors were laughing about the experience. I accept the possibility that her grandson actually had made a visit. Who can say for sure?
Richard came back in today, his third admission in two weeks. He'd had strokes some months back and was getting artificial nutrition through a stomach tube. On each admission he had heart failure, and he seemed more frail each time. On the last admission, I'd introduced the word "dying" into the conversation with his wife Alice. She'd swallowed hard, made him a DNR, and told the nursing home he shouldn't be admitted again. But at one o'clock in the morning, when the home called to say he was unresponsive, she asked that he be transferred to the hospital. When we arrived his legs were cool and he was having 40-second pauses when he didn't breathe at all. He was gurgling because of saliva pooling in his throat. We met with Alice, who was supported by a close friend, and told her the end was coming soon. She cried and agreed, telling us that it was her denial that had prevented her from seeing the obvious until now. Within an hour he was transferred to the local hospice's inpatient unit.
Everyone dreaded seeing Janet. Morbidly obese, she had severe chronic lung disease, diabetes (made worse by the cortisone she needed for her lungs), a myriad of other medical problems, and among the most dysfunctional families we'd ever heard of. She went on at length about children gone bad, siblings who refused to help her, and the many health care professionals who'd refused to listen to her. It was hard to listen to her because she bounced from thought to thought and needed repeatedly to be brought back to the here and now. We got all this history the day before yesterday when we met her for the first time. It was clear that the spike in her hospital visits in the last few months coincided with her son moving out of her house and disappearing. I finally said, "Look, you have no good choices, just bad ones. You need to weigh them and pick the lightest." I mentioned a nursing home, which she dismissed immediately, but a few minutes later asked how she might get information about them. "Our palliative care social worker will help you," I promised. Yesterday Janet agreed to go to a nursing home for rehabilitation, and I was told I had worked a miracle. It didn't feel like one to me.
Graham is in his sixties but looks a lot older. His heart failure is getting worse, but his breathing was better after starting an opioid medication. He is waiting for the required three days in the hospital to be over so that he can go to a nursing home, where hospice will become involved. He and his wife both know that he won't be hospitalized again.
Martha, a charming lady in her early seventies, has the misfortune of having two cancers -- a chronic form of leukemia, and a newly diagnosed kidney cancer. She's getting chemo for the first and radiation for the second. Her pain is not a problem, but her nausea is. We're trying to persuade the nursing home to pre-medicate her with anti-nausea meds before they send her in for radiation treatments. And we're trying to persuade Martha and her husband to talk about her preferences should she become very sick. Getting a signed power of attorney form was the major advance care planning accomplishment of her last hospitalization. Maybe the accomplishment this time will be a simple conversation between husband and wife.
As the day was winding down, I noticed that Donald had been readmitted. We'd met him last week when he came in for back surgery. He'd had a vertebral fracture that looked a lot like cancer on his MRI. Other tests suggested that this lifelong smoker had lung cancer that had spread to his bones. The orthopedist took a biopsy and then treated the fracture by filling the collapsed vertebra with a special cement. Donald, who was cantankerous and frankly nasty when he was admitted, got good pain relief and left in high spirits. Unfortunately over a period of several days his legs became numb and he was readmitted today when he couldn't walk. When cancer in the bones of the spine compresses the spinal cord, that's a genuine emergency. I helped the hospitalist get him started on intravenous cortisone and made sure that radiation oncology was geared up for emergency treatment. If it's going to work, it has to be started when symptoms first appear. Donald may have waited too long to get help, so he may never walk again. We'll just have to see.
They say that if you only have a hammer, the world just looks like a nail. Yesterday our palliative care team had a hammer, flat-blade and Phillips screwdrivers, a pair of pliers, and a couple of wrenches. We didn't know what kind of suffering we'd run into, but we always respond somehow to what's in front of us. Yesterday was a day to remember.