My wife Uzma died peacefully at home. She hadn’t taken any painkillers for three days. Our kids, my parents, and I were next to her. In the weeks leading up to her death, she was visited by many old friends. Many new friends she had never met sent her flowers, cards, and food. It was a good death. Yes, for the last five years, cancer and its treatment took a physical and emotional toll. Yes, she left us a lot earlier than she deserved to go. Yes, the kids are young.
Nevertheless, it was a good death. Few among us wouldn’t want her end — pain-free, at home, with loved ones near. None of it would have been possible without hospice.
Uzma chose her palliative care physician long before hospice. While Palliative Medicine physicians are affiliated with hospice, they try to improve patients’ quality of life even before they ever need hospice. But when the cancer specialist referred Uzma to hospice, I knew that the focus would shift to comfort care. But I didn’t quite understand then the incredible, warm, enveloping embrace hospice provides to the dying and their family. A referral to hospice is not a death sentence. The death sentence was the discovery three years ago that Uzma’s breast cancer had spread to the liver. About half the women whose breast cancer goes to the liver die within three years. Hospice doesn’t hasten the end; it merely ensures a dignified dying process that is as comfortable as the disease allows.
Every single hospice appointment was at home. The nurses came 2-3 times a week. The doctor visited every couple of weeks. The physical therapist, social worker, and chaplain all came home to meet Uzma. They met her in whichever room she was in at the time. Though they had their professional tasks to complete, they met with Uzma for only as long as she wanted to.
But for going to the hospital for paracentesis — draining of the fluid that accumulates in one’s belly when the liver gives out — Uzma wouldn’t have had to leave home at all while in hospice. Upon the recommendation of hospice, the second time they did the paracentesis, they put a tube in the belly. The hospice nurses then taught me how to drain the fluid to keep Uzma comfortable by keeping her belly from swelling up.
There were no unnecessary interventions. No lab tests whose results wouldn’t change treatment. No medications that wouldn’t provide comfort. One of the first things we received from hospice was a comfort medication kit to alleviate any suffering accompanying dying. They included drugs to help with agitation, anxiety, pain, and respiratory secretions. No running to the pharmacy for medications, either. They were all delivered to our home. The physical therapist who came home said his goal was to ensure safety and comfort. So he taught me how to help my wife get out of bed, use the bathroom, sit around, and move about safely and in a manner that would be less tiring for her. As I said, there are no unnecessary interventions.
Had Uzma needed hospitalization for any reason — a condition unrelated to cancer that she would survive with treatment in the hospital — she would have bypassed the emergency room and been admitted to a bed reserved for hospice patients. Had I needed respite from caregiving, Uzma could have been admitted to a hospice bed at a nursing home for up to five days. And the hospice staff would coordinate and arrange everything. We never had to use these options, but knowing they were there gave us comfort and peace of mind.
Two of the most emotionally essential services that hospice provided were a chaplain and a social worker specializing in counseling children about death and dying. The visits with the chaplain were among the longest Uzma had with any of the hospice professionals. It didn’t matter that the chaplain and Uzma came from different faiths. He was able to provide her deep solace. The social worker provided some excellent tips about helping kids. The chaplain and the social worker provided incredible emotional support to Uzma and us.
Then there’s the equipment that hospice provides. We already had a cane, a walker, and a wheelchair. But if we didn’t have those, hospice would have given us all of those. Eventually, hospice provided a commode so Uzma could go without having to go to the bathroom. But the most important and most-used thing that hospice provided was a hospital bed.
Uzma had decided long ago that when the time came for the hospital bed, it would go next to a large window in the living room that faces the front of the house. From our bedroom window, one can only see the back of other homes and the alleys separating them. In the front, she could see trees. She could see people as they parked their cars and walked up to the house to visit her. Most importantly, she could see our daughter’s bus stop. Uzma would watch her board and exit her bus from the hospital bed. That’s mainly why she had chosen that location for the hospital bed long before we got the bed. The second most important reason she said was that did not want to die in a bedroom, where people go to sleep. She wanted to die in a living room where people lived and met.
Hospice was available 24/7 to consult about any difficulties Uzma faced. Those phone calls were always reassuring. When she died, one of the coldest nights ever in Chicago did not stop the hospice nurse from coming to examine her and certify her death. He also called the funeral home. Then he comforted us and explained our next steps with the funeral home that night.
Hospice didn’t stop all suffering. It didn’t stop the pain. But what it did for us was priceless. Without hospice, Uzma would not have died in peace, at home, without pain, and surrounded by family. She would not have died in the room where she wanted to die — our living room.
[This post was originally published on Left Boob Gone Rogue at www.UzmaMD.com. It has a companion post How A Doctor Chose Her Last Doctor. The creator of that blog was my late wife, Uzma Yunus, MD. Her blog is about finding inspiration and humor in the breast cancer experience. Its themes are love, life, loss, and resilience in facing one’s mortality. She wrote and published a book named after her blog, “Left Boob Gone Rogue: My Life With Breast Cancer.” It is available as both paperback and Kindle edition on Amazon]
