A few days after our friend Jim’s* funeral, my husband and I took Helen*, his widow, out for lunch. Jim’s death was not easy. He had suffered through years of treatment for cancer that had started in his lungs and spread throughout his body. When I asked Helen how long he’d been in hospice, I was stunned when she said, “Four days.”
She must have read the surprise on my face, as she quickly added, “He refused to accept that he was dying, and whenever I tried to talk to him about end-of-life choices, he shut me down. I think there was something that he was trying to work out, but I don’t know what it was.”
I was surprised. Jim was almost ninety years old. I would have expected him to be at peace with death.
Jim’s choice to fight his cancer to the end reminded me of a conversation I had with Dawn Hemstreet, a former oncology nurse who works for Willamette Valley Hospice in Salem, Oregon. I interviewed her last year after my friend Sally* died from brain cancer. I was angry with her doctor, because she didn’t refer Sally to hospice until ten days before her death.
I asked Dawn why she thought doctors are sometimes reluctant to refer patients to hospice, and she said, “Fear of death is a very real thing, and even though we all know we’re going to die, we’re often in denial about it. In this culture we don’t discuss death.”
She went on to say that during the years she worked as a nurse with cancer patients and oncologists, she learned to respect each person’s journey. She said, “Some people are willing to submit to any treatment and suffer through any side effects in order to extend their lives, even if it’s just for a few more months. Others will say, ‘I’m done with treatments. I want to enjoy the time I have left, and I want to spend it with family and friends rather than in doctors’ offices and hospitals.”
Choosing Hospice Instead of Treatment
After going through a year of miserable medical treatments for pancreatic cancer, my friend Faith’s* doctor told her that the current course of chemo wasn’t working. He said he wanted to try something else.
Faith asked, “If I do this, how much longer will I live?”
The doctor said, “Maybe six months.”
Faith then asked, “If I don’t do what you’re recommending, how long do you think I’ll have?”
He said, “Maybe six weeks.”
Faith’s response was, “Okay. I’m done.” She left the doctor’s office and called Connie*, her closest friend and told her that she had decided to discontinue treatment.
Connie asked, “What can I do to help?”
Faith said, “I’d like to have a party while I still have the strength to play.”
That was on a Monday afternoon. On Friday evening, a large group of Faith’s friends gathered on the rooftop of a building to say goodbye. I will never forget how beautiful Faith looked that night when she and her husband entered the party. They were both wearing white––head to toe. I thought they looked like models for a tropical cruise line.
As the sun set, we ate. We drank. We sang and danced. Late into the evening, I sat with Faith and held her hand as I told her how much I admired her grace and loving spirit. We laughed over shared memories, and we cried as we acknowledged that her wonderful, productive, and positive life was quickly coming to an end.
She went into hospice care after the party. For the next several weeks, friends took turns delivering meals and staying with her so her husband could get a little rest and relief from his bedside vigil. The hospice team kept Faith’s pain under control, and several weeks later, she slipped away peacefully in the middle of the night.
It’s been more than five years since Faith died, but I thought about her recently when I read an inspiring and heartbreaking story about Jerika Bolen, a fourteen-year-old girl from Appleton, Wisconsin who decided to throw herself a prom last summer before going into hospice care. Jerika was born with spinal muscular atrophy type 2, an incurable disease that affects the nerves in the spinal cord. Jerika had never walked. She had endured thirty surgeries in her short life, and she suffered constant, severe pain. She couldn’t perform any basic self-care functions, including breathing and swallowing without assistance.
According to a story in USA Today Network – Wisconsin, earlier this summer, Jerika told her mother that she was ready to die. She knew that her pain would increase as her disease progressed. She also knew that her ability to speak, along with the limited control she had of her hands, would eventually be lost. She’d decided she would go into hospice care at the end of August. But like my friend Faith, Jerika wanted a farewell party. She decided to have a “prom,” complete with decorations, fancy dresses, music and dancing.
A touching YouTube video sparked contributions to her GoFundMe campaign. People from all over the world contributed gifts and more than $33,000 in cash to fund the event and her end-of-life care. On July 22, her prom night, more than 1,000 people joined in the celebration of “Jerika’s Last Dance” at the Grand Meridian ballroom.
Family, friends, police officers, firefighters, television crews, and total strangers showed up to show their respect, admiration, and support for Jerika’s spunk, determination, and bravery.
It was a glorious evening, but all of the publicity sparked some controversy over whether children should be allowed to make their own decisions about going into hospice. Four disability groups sent a letter to the Wisconsin Department of Children and Families asking for intervention.
Jerika and her mother were not dissuaded by the groups’ efforts. She did go into the Sharon S. Richardson Hospice in Sheboygan Falls, and she died on September 22, 2016. Her mother released a brief statement, “My only words to anyone questioning this is that I love that girl with every cell in my being, and no one in their right mind would let someone suffer like she was.”
Choosing Treatment Over Hospice
Even though our friend Jim suffered at the end of his life, I know he still enjoyed having friends come by to visit. A former professional musician, he especially friends who would play music or sing with him.
In the spring before my friend Sally died from brain cancer, I took her out for lunch after her doctor had told her that there was no hope for a cure.
When I asked Sally what her immediate goals were, she said, “I want to live until September 14th, so we can celebrate our tenth wedding anniversary. I’m going to look into paying for experimental treatments.”
She didn’t get the treatments, and she died a month short of her anniversary. The end wasn’t easy, but Sally loved her husband and her life so much, that she simply wasn’t willing to give up as long as she had an ounce of energy to fight.
A Personal Choice
The one thing I have come to understand as I have lost people I know and care about, is that the end of life is a unique experience for every individual. I’m a huge advocate for hospice, because I’ve witnessed how they help people manage pain and maintain their dignity as they go through the process of dying.
I think I would choose hospice over treatment, but I’m healthy now, so I can’t know for certain how I would feel if I was terminally ill and my time was limited.
Rather than judging what we think other people should do, perhaps the best course of action is to accept that making the decision on how we will exit this life is a profoundly complicated and personal choice. Maybe the most generous and loving thing we can do is respect each person’s choice and figure out what we can do to support them and make them feel loved and safe through their final days.
* Not their real names
Elaine K Sanchez is a caregiver speaker and the co-founder of CaregiverHelp.com, an online support program for family and professional caregivers. She is author of the unflinchingly honest and surprisingly funny book, Letters from Madelyn, Chronicles of a Caregiver. She also writes the blog, Caregiver Help Word of the Day.