Through hospice care, the terminally ill gain comfort and control.
A death sentence is one of several things Melissa Renzi has in common with thousands of terminally ill patients.
Melissa lives day-to-day knowing her heart could stop without warning, if her body becomes too malnourished from her diseases. She suffers from gastroparesis and secondary mitochondrial disease—both incurable.
At 46 years old, Melissa lives with her husband, Jim Renzi, in their home in Rhode Island. She checks things off her ever-growing bucket list, like posing for 1950s-inspired pin-up shots. She colors and paints when able, makes awareness videos, watches movies, snuggles with her “furbies” (two cats, Sherbies and Puss, and emotional support dog, Sia) and does whatever she can to make others smile. Being there for others takes Melissa away from thinking about her constant pain.
Melissa relies on three and a half liters of oxygen at all times. She can no longer do much without her walker or wheelchair and describes herself as being tired “like a limp noodle.” She was diagnosed with gastroparesis in 2012. The condition prevents her stomach from emptying properly, according to Mayo Clinic. One night in 2012, she woke up to a stabbing pain in her left side and nonstop vomiting. This is when her life began to change.
Soon after that diagnosis, she was also diagnosed with dysautonomia. According to Dysautonomia International, dysautonomia is an umbrella term describing several medical conditions that cause malfunctions in the Autonomic Nervous System.
Melissa has the form of dysautonomia known as postural orthostatic tachycardia syndrome (POTS). POTS specifically causes symptoms like lightheadedness, fainting, chest pain, shortness of breath, shaking, and temperature sensitivity.
Not being a disease itself, POTS is a cluster of symptoms that are frequently seen together. There are several underlying diseases and conditions known to cause or be associated with POTS, like mitochondrial diseases, vitamin deficiencies, anemia, and diabetes, to name a few.
Although POTS can strike any age, gender, or race, it is most common in women between 15 and 50 years old. Approximately 80 percent of patients with POTS are female.
In following years, Melissa was confirmed to have secondary mitochondrial disease (SMD). This means she has abnormalities in her gene coding that causes the mitochondria in her cells to not function properly. According to a medical study published by S. Karger AG, SMD accompanies many hereditary non-mitochondrial diseases. It can either be hereditary or acquired.
In Melissa’s case of SMD, she suffers from shortness of breath and doesn’t get enough oxygen to her muscles.
Melissa’s doctors also believed she had a stroke sometime in November 2015. She is anemic, had a biopsy confirming a small fiber polyneuropathy, and suffers from dysphagia, esophageal adhesions, reflux, a hiatal hernia, lumbar stenosis with bulging discs, sciatica, and a Vitamin D defect. With each issue combined, Melissa looks for a way out.
She signed the papers to receive hospice care on July 27, 2017.
Melissa’s 26-year-old son suffers from many of her symptoms, like seizures and migraines, but has yet to be diagnosed.
Melissa says knowing her son suffers undiagnosed kills her day by day. She blames herself, even though she knows most of her ailments aren’t hereditary.
Her friend Dedee Paysse, who has many medical conditions similar to Melissa’s, said research on some conditions she and Melissa share, like dysautonomia and mitochondrial disease, is still relatively new. Because so little is known about their conditions, Dedee said most doctors don’t know enough to conclude whether their conditions are purely hereditary or not.
Melissa has more diseases than any patient her hospice team has ever treated. Everyone around her learns as they go, focused on keeping her comfortable.
According to the National Caregivers Library, to be eligible for hospice programs or to receive hospice benefits from insurance, a patient must be considered terminally ill, meaning they have six months or less to live. People with terminal illnesses often choose hospice because it lets them spend their last moments at home (unless they opt to receive care in a nursing facility), usually surrounded by family, seeking to improve the quality of life that is left.
Melissa says hospice is her reality. Her only option is to live what life she has left. There’s nothing her doctors can do. But while suffering and facing her mortality, Melissa stays positive. She says her sickness brought her the most beautiful people in her life.
Through her illness, she reconnected with Jim, who became her husband. After not seeing him since sixth grade, he came to visit her one day. He had expressed needing a trip away from his everyday life, and Melissa extended an invitation. He has stuck by her side ever since. They married September 3, 2016.
Melissa says Jim keeps an eye on the people who care for her, attends all her appointments, works 60 hours a week, and makes sure he listens when nurses come around so he can learn how to help. That devotion has been much of what has kept Melissa positive since her first diagnosis.
“Most relationships fail when someone’s ill,” she says. “It’s hard, but he’s never left.”
Melissa has also made new friends, including her infusion nurse, Nancy Weeden. Melissa looks forward to getting Weeden’s weekly hug when she goes to the Infusion Center to get her hydration infusions. Melissa says Weeden is her dearest friend, with the exception of her husband, and helps keep her spirits high.
But it isn’t always so easy. Melissa’s illnesses have also driven away some friends. They say they’ll visit but usually don’t, and she doesn’t get her hopes up anymore. She misses them but understands that sickness can be difficult for people to process and be around.
Before becoming sick, Melissa served as a regional trainer and hyperbaric technician at a wound center in Pennsylvania for 10 years and did Zumba two to three times a week. She lost her job in February 2014, due to her illness, and moved back to her hometown in New England later that year. Leaving her job took a piece of her heart. She misses it every day.
“I’m sad inside,” she says. “I will not lie. But I will fight till the end. No matter how hard it’s gotten, I keep going.”
According to a study conducted by Robert L. Fine for Baylor University, major depression affects 25 to 77 percent of terminally ill patients. Melissa fell into that group when she first learned she would die in less than six months. She still experiences sadness, but Melissa and Jim say they stay goofy because life’s too short. They want to focus more on the time Melissa has than on time she doesn’t. Doctors have asked if she can stay with them for the day after she finishes up her appointments because they see her “always smiling,” and she keeps them hopeful.
Staying positive in the face of a terminal illness helps improve treatment quality, according to studies by Dr. William S. Breitbart, a psychiatrist and international leader in the fields of psychosomatic medicine, psycho-oncology, and palliative care.
In a lecture for the University of New Mexico’s Institute for the Development of Education and Advancement of Science in Psychiatry program, Dr. Breitbart described a psychotherapy process he created to help terminal patients have the best possible quality of life in their remaining time.
These therapy sessions force patients to concentrate on the importance of meaning. They discuss identity and the effect of limitation, how to engage with life to create meaning, finding joy in things they find beautiful, making connections, and reflecting on the future. In his lecture, Breitbart described meaning-making, connectedness, and the capacity for transformation as essential to human survival.
But Breitbart says people let their imperfections get in the way.
If humans don’t accept themselves as imperfect beings, they can lose meaning. They might feel denial, shame, demoralization, depression, anger, hopelessness, disconnection, and other negative emotions.
By facing death and accepting life’s uncertainty, humans can feel less guilty about their imperfections. They must forgive and accept themselves as imperfect to restore or sustain meaning in life through self-actualization and connection to others.
Besides causing internal struggles, having a severe illness doesn’t come cheap.
Most of Melissa’s hospice costs are covered by her husband’s Blue Cross membership and Medicare, but she has thousands of dollars in medical bills from before hospice that insurance doesn’t cover.
Melissa and Jim try to pay what they can, but they struggle just to live, Melissa says.
According to the Hospice Foundation of America, most hospice patients are eligible for Medicare, which covers all aspects of hospice care and services, excluding some small copayments for prescriptions and respite care.
In most states, Medicaid offers similar coverage. Many private health insurance plans offer a hospice benefit, though coverage may differ between each plan and from Medicare.
According to a survey by The Commonwealth Fund, 25 percent of privately insured adults had affordable health care costs as measured by the Affordability Index. Among adults with low incomes, more than half had high medical cost burdens. Those who had no health insurance had even higher cost burdens.
There are other options for the terminally ill. According to National Caregivers Library, some may live in around-the-clock nursing homes where care is provided and covered similarly to hospice. Other patients might end up dying in the hospital.
But a study by the National Hospice and Palliative Care Organization found that hospice patients survived longer than non-hospice patients in four of the six disease categories accounted for.
Ball Memorial Hospice Team Lead Janice Vester says hospice patients come to them at pretty much all ages. The nurses at Ball Memorial Hospice Center have seen people from infancy to age 108, and the same goes for hospice nurses all across the world.
She says providing hospice care can be sad, but it’s not all about the sadness.
Jana Reinke, another nurse at Ball Memorial Hospice Center, says allowing patients to be at home where they may die with dignity is reward enough for her.
For Melissa, hospice is giving her control in an inevitable fate. Through hospice care, she may get more time, and cross off more of her bucket list.