I broke the biggest promise I ever made to my mother the day I enrolled her in hospice. A month before she died she’d begged me never to do it. “I don’t want those volunteer do-good strangers in my house fawning all over me,” she said. Of course, I vowed to honor her wishes — only to bear her anger and my guilt when ultimately, three days before she passed away, my family and I brought hospice in. That was five years ago. And despite everything, I still thank God every day that I didn’t honor my word. Let me tell you why.
Hospice and palliative care is one of the least understood programs among families struggling with terminal illness. It conjures up images of kind-hearted strangers with no medical background stopping by to deliver soup and hold a loved one’s hand days before their death. Whenever I suggest to friends with incurably ill parents that they consider hospice, their eyes flash wide and they declare defensively, “We aren’t there yet! My parent isn’t about to die!” It’s an uneducated and unfortunate response.
When a patient is deemed terminally ill, by definition it means there is no cure: there are only options for extending life for an uncertain amount of time. Frequently these options are miserable, painful and detrimental not only to a patient’s physical well-being, but also to her state of mind. Hospice and palliative care takes a different approach. Rather than focus on extending life, it strives to improve the patient’s current life — to comfort and help her enjoy quality time during her final months, weeks or days.
Like so many — myself included — my mother didn’t appreciate this when the brain tumor she’d been diagnosed with in 2008 came back after a course of radiation. We had only three options: do nothing and watch her suffer terribly; re-admit her to the hospital where they would pump her full of the steroids that she feared and despised; or enroll her in hospice so she could stay in her own bed, look over the gardens she created and pass quietly and pain-free.
Once our visiting nurse explained to me exactly where we were on the road-map to death, the decision to betray my mother’s wishes was clear. But delivering the news to her was not easy. As her nurse and I reviewed her reality, Mom looked me full in the eye and asked, “What do you want me to do?” I held her hand and told her what my father, brother and I had agreed: she should get into hospice immediately. Her jaw clenched tightly, she closed her eyes and turned her head away from me as she gave just the slightest nod of defeat. My heart broke into a million pieces, as I’m sure hers did.
Yet contrary to all that we’d anticipated, for the next three days we were not overrun with throngs of “soup deliverers.” Instead, a handful of highly trained staff visited the house daily: a primary nurse, a home-health aid and a counselor who guided our actions and shaped our expectations of what lay ahead. Hospice requires family to take on the bulk of the care-taking, so the staff taught us how to administer pain medications and which symptoms to watch for in order to keep my mother comfortable. I never felt more connected to my mom then the moment after I helped her adjust her pillows and gave her a morphine dose. “When did you get so brave?” she asked me. I told her that I had learned it from her. While that was true, it was also true that the hospice team had given me the courage and the information to act as her final caretaker — something I consider a life-changing gift to this day.
When my father was forced to face his own terminal illness just four months after my mother passed, the understanding of hospice he’d developed during my mom’s final days made it an option he proactively explored. For 19 years he’d struggled with congestive heart failure. While the first 16 years were tolerable thanks to his overall good health, his final three years were burdened with successive trips to the hospital that sapped his energy and hope.
For a few months following Mom’s passing he rebounded, determined to stay alive for his children, but ultimately, he started to wane. On Thanksgiving eve 2008, he was taken by ambulance to the local hospital where he lay on a cold metal gurney for three hours. The next day he could barely stand from the back pain resulting from the careening 911 ride to the ER and a night’s stay in a narrow, hard hospital bed. “I don’t ever want to go through that again,” he told us emphatically. “Next time I think I’m having a heart attack, I just want to stay put in my own home and have somebody come to me. Can we find out if hospice will do that?”
Not only could hospice do that; they did so for nine months. Every bit of stress connected to making a 911 call was eliminated and with his mind at ease, his quality of life improved exponentially.
Unlike my mother, my father understood that hospice brings together qualified nurses, therapists and specialty counselors to develop a unique pain management and care plan for each patient.
Until experiencing it first hand, my family — like so many others — was unaware of what should be common knowledge: that by combining top-notch medical care with a compassionate human touch, hospice enables us to choose the circumstances of our life, whatever the duration may be, and live in comfort and with dignity.