I used to be a hospice salesperson. Actually, I was a social worker in a cancer center. Many patients did well with their treatments and went on to live long lives. But many ran out of options after experimental treatments. The doctors had nothing else to offer them. I was often called in after the doctor dropped the “hospice bomb,” as educating about hospice was not always in the oncologists skill set.
Here’s what I would say. Home hospice care is a way for your doctor to continue taking care of you, without you having to come to the doctor’s office. The hospice nurse functions as the doctor’s eyes and ears, seeking input and guidance from the patient’s primary oncologist. The hospice nurses are on call 24 hours a day, so if you or your family member has a concern or are scared, they are available by phone or will come to your home (even in the middle of the night.) Social workers, home health aides, clergy and volunteers help round out the hospice team. I would reassure patients that they were not being dumped by their medical provider, but that it was felt that the hospice model of care was the most appropriate at this point in time. I would tell family members that hospice nurses teach families about the dying process (from cancer, in this case,) so they know what to expect. That death had been taken out of the home in the last several decades, so most of us have no idea how someone dies. I would advise the family about the things that would be helpful to care for their loved one at home – a hospital bed, a bedside table, a bedside commode. I explained that home hospice does not provide 24 hour care – they are there to support the patient’s primary caregiver and their network of family and friends. I would help families decide if this was realistic for them to do, taking into consideration the patient’s wishes.
And then I was suddenly on the flip side of this conversation.
My mother had cancer for 12 years. She had 2 years of treatment, an 8 year remission, and a recurrence 2 years ago. She actively pursued every treatment available to her. She endured awful chemotherapy. Fortunately, she was relatively symptom-free from her cancer until a year ago when she developed pain in her arm and chest. She consulted with her oncologists and a pain team, with little relief. My petite mother, who only took one aspirin when she had a headache instead of two, was on whopping doses of serious narcotics. She hated it, but preferred being sleepy to being in pain. The months wore on. She continued to pursue treatment, though her options were dwindling.
I said to my father, “Sometimes I think she’s going to be fine, and sometimes I think she’s dying right before my eyes.”
It was a very difficult process to watch. I respected my parents’ autonomy and my mother’s desire to pursue life. I wanted to “navigate them with grace,” as her oncologist (and mine as well) so beautifully articulated for me. But hospice was always in the back of my mind. The pain medicine did not always bring relief and my mother was in stoic agony. My parents would call the oncology practice for advice and would have to wait for the nurse to call back. My father felt helpless, as Mom’s primary caregiver, and at a loss, not knowing if he could offer her more pain medicine. In August, while still receiving a new chemotherapy, I finally broached the subject with my Mother.
I said, “Mom, I really wish you had some home care.”
“You mean, hospice?” she asked.
She knew what I used to do for a living and what was in the back of my mind. She was reluctant at first, saying she wasn’t ready for that. I told her that I wasn’t suggesting that she crawl into bed and die, but rather I wanted her to live as long as possible. I just couldn’t watch her live in pain and suffering any longer.
My father was very agreeable and my Mother relented soon after.
“Mom, you had to make decisions for your mother that she wasn’t always happy about (she had Alzheimer’s) but you knew were in her best interest. I want to do the same for you,” I told her. It was really hard.
The hospice people came to do the intake. My mother was completely dressed, had make-up on, and put out cookies for them. Always the lady. Regal, my sister says.
She didn’t want to call it “hospice,” which the staff said was fine, as long as she knew what the type of care was all about. It’s about allowing the disease to take it’s natural course. No heroic measures. Don’t call 911, as the EMTs are obligated to perform all possible life-saving actions. A person could end up in the hospital where they determined they didn’t want to be by choosing home hospice.
We took care of Mom in her home, my Dad at the helm and the rest of my family helping out. The hospice nurses were phenomenal, visiting regularly and tending to my Mother in the middle of the night when we called. They helped with her breathing, which had become labored, and best of all they found the right medicine to get rid of her pain. They eased the pain for all of us of a very emotionally and physically draining and painful process.
Tending to her and watching as she slowly slipped away was wrenching but it allowed us to give to our mother in her last days the way she effortlessly gave to us our whole lives. She brought us into the world and we were going to honor her by helping her peacefully transition to the next world.
She died peacefully, three and a half weeks after signing on to hospice, at home, surrounded by her family. I learned that having my Mom die in the home that she loved was a gift. Even when she had a hospital bed, she made sure she had a view out the wall of glass in her bedroom at the scenes of nature that were such a source of comfort and joy to her throughout her life. It was so much better to be caring for my Mom in the family home than in a crowded hospital room, with all the inherent sounds, smells and strangers. My husband noted that rather than focusing on the fact that she died in the house, the predominant feeling that people share is her absence from the space that she was so positively associated with. Hospice helped make it happen. We were all grateful for that.
You really have amazing narrative instincts. Keep writing, keep developing your big talent. I’m cheering you on. M.
Thank you for sharing this. I lost a friend a few months ago to cancer. Watched her die in a hospital where her doctor didn’t even have privileges because she was taken to a community hospital emergently. But because in their family’s minds “hospice” was synonymous with “giving up,” they had refused. She had a young son and no one wanted her to give up. In the end, her death appeared to be a great deal of suffering. it was so difficult for all of us to watch her suffer, watch her be addicted to pain meds that they wouldn’t give her because of their ‘regulations’ and not know what to do to help. Looking back, I think hospice would have been so helpful. Probably for the aftermath as well. Thank you for providing this really critical perspective.
i love how you risked putting out what you’d been thinking about hospice at a time when your mother appeared to have the readiness for it. somehow you were reading each other’s states and minds. she was letting you flip to being the caregiver and you were letting yourself go there even though unfamiliar and painful. you have an amazing ability to fuse pragmatism, humor, resilience and calm all wrapped up with a “twinge of edge” that makes you so incredibly authentic in who you are and how you give. thanks for the gift of this….keep ’em coming pal
Wow. Just learning about your blog now. Beautiful. We also cherished the time we cared for David’s mom at home. When hospice came for the intake, we were taken aback by their “assumptions” that it was time to plan for Margaret’s death. After all, the doctor said she could still live for six months. Rather, she had a mere few weeks left of her life. With the great wisdom and urging of our Rabbi, we used those weeks to share (and air) thoughts and feelings that would otherwise have gone unspoken. While grueling in the end, the blessings of home hospice were immeasurable for the surviving family, as well as for Margaret. Keep writing!
Thank you for sharing your story, Susan. I went through a very similar experience with my mother 29 years ago. Although I was very resistant to having the hospice nurses in my home, probing me with questions– looking back now, it definitely was nice for her to die peacefully in our home.