Amid growing need, hospice providers face hurdles

After seven months in hospice care, Karl Travis felt like his life had been held in suspension.

"I am eight parts grateful and two parts confused," he wrote in a Caring Bridge journal entry on Nov. 15, 2020. "My spirit floats between memory and hope, between this morning and eternity. I'm uncertain where to aim my heart or my energy."

Travis, 58, learned he had chronic thromboembolic pulmonary hypertension in 2018. The rare and progressive condition is caused by clots in the blood vessels that don't go away after three months on blood thinners, according to the Cleveland Clinic.

It has now been nearly two years since Travis started hospice care, which is unusually long for someone to be in hospice. The former pastor of First Presbyterian Church of Fort Worth, Texas, said everyone is different, but he believes hospice was the best thing for him and his family.

"There are worse things than death," Travis said. "Hospice lets people die with dignity."

Hospice care focuses on the quality of life for people who have a terminal illness and have a short time estimated to live. People receiving hospice care do not receive treatment that can cure the condition or slow its progress.

The hospice industry in the United States is seeing an increased demand for services. Before the pandemic, the industry was faced with an adult population that was growing older. Now, more patients are realizing the benefits of hospice care, and the industry is facing a staffing shortage.

Vickie Jingle, CEO of Community Healthcare of Texas, said the hospice organization has seen 5% growth year after year in the demand of patients seeking at-home care. Restrictions around COVID-19 have also fueled more interest in hospice.

"What we saw was so many people started realizing that if they go to a hospital or if they go to a nursing home, they're not going to be able to have their loved ones come in," Jingle said.

The path to hospice care

Continuum of care is a model used to understand the different services a patient may need over time. A person may go through the path of seeing a primary care physician, to going to a hospital for preventive care, to a facility for rehabilitation.

Britt Berrett, a professor at the University of Texas at Dallas and former president of multiple hospitals in North Texas, said the model is important because providers want patients to receive the appropriate level of care at the right time with the suitable resources.

"If you move too quickly, on a lesser level, you might cause injury and they will have to return to a higher level of care," Berrett said.

Hospice care can be the last area of a person's continuum of care.

Travis spent countless hours in hospitals across the country for years. He experienced multiple blood clots and procedures. He had numerous doctors.

"My docs are trying to keep me comfortable. I appreciate it except that I'd rather be at work," Travis wrote in an April 2019 journal entry. "Transitioning from a more-than-full-time-ministry to sedentary disability is like leaping from a bullet train; the train speeds away while you catch your breath."

Travis was familiar with the hospice care system before receiving services. His mother and some church members received hospice care. He found out about Community Healthcare of Texas while he was a board member of the James L. West Center for Dementia Care.

It was important for the Travis family to have at-home hospice care. Travis said hospice care staff came to his home hours after he told his doctor he was ready to stop treatment.

Travis' doctor told him initially that he had no more than 30 days to live.

"Most people think of hospice as 'you're on death's door' or your "deathbed,' " Travis said. "But a lot of people are discovering that you may be on 'death's driveway' and still benefit from hospice."

Patients usually begin hospice care once treatment for their terminal condition stops and a doctor has provided an estimate of life expectancy. Many enter hospice if the life expectancy is estimated to be six months or less, and they cannot benefit from a "curative treatment."

Travis' writings reflect the process of coming to terms with his situation.

"My counselor says that naming lost dreams helps us grieve them, and he's right, though I am uncertain that this grief can be overcome," Travis wrote in a February 2020 journal entry.

Hospice services can be received at home, a hospice facility, nursing home, assisted-living facility, or a hospital. Jingle said Community Healthcare of Texas hospice patients have access to nurses, home health aides, social workers and chaplains.

"A lot of times, families and/or the patient are reluctant to have those end-of-life conversations to start expressing what their needs and wants are," Jingle said. "So our chaplains and our social workers are really good at facilitating those conversations."

A hospice care nurse comes to Travis' home once a week. A nurse is also able to come to the family's home if Travis is in pain or needs something. When Travis becomes closer to death, nurses will be at his home more frequently.

Travis' wife, Jaci, left her job as a high school counselor to be her husband's full-time caregiver. She said it is comforting to know the family has support through members of the interdisciplinary hospice team, which helps them talk about their journey.

"Knowing we're going to see a nurse weekly and I can pick up the phone or text, they are so responsive," she said. "That's very comforting as I lean into the care-giving role."

The COVID-19 pandemic has caused some in hospice care and caregivers to feel isolated. Caregivers have to be concerned about taking precautions to not get their loved ones sick.

"Jaci and I have always been particularly close as a couple, but hospice has given us the environment in which to grow even closer," Travis said. "And as sad as the circumstances are, it's still dwarfed by joy because hospice has given us that space."

Jaci said there's no playbook for her new role as a caregiver, but she finds comfort with her husband having hospice care at home. She said it's a gift and helps them keep the promises they made in their wedding vows.

Nursing shortage

Hospice industry leaders said the greatest non-COVID related challenge in the industry is staffing, according to the 2021 Hospice News Outlook Survey and Report by Hospice News and Homecare Homebase .

The Travis family said they have gratitude for their hospice-care team. The essential workers give them support, when they have their own families to also care for.

"It is remarkable to me for when they show up and for what they do for us," Jaci said.

Health care institutions across the United States are experiencing a shortage of nurses. Those in the hospice industry saw nurses leave the field or retire during the pandemic.

"It has just been exhausting for a lot of people," Jingle said. "It is hard to continue to give so much of yourself when you're just tired and fatigued. We are seeing more and more of that."

She said hospices are competing with hospitals, nursing homes and other organizations to find quality staff.

The growing trend of travel nurses is also making an impact on the industry. Travel nurses are heavily recruited and have the potential to make larger salaries.

Berrett, the UT-Dallas professor, said the shortage of nurses can impact the continuum of care model.

"If we have a shortage of nurses that are in hospice care or home health care, that means we can't change [patients] from a higher level of care," he said.

This can cause other areas of care, like assisted-living facilities, to be filled to capacity.

Experts say things that can help with the demand are better access to nursing schools for those who desire to be in the field, gateways to help licensed practical nurses (LPNs) become registered nurses, and more professors at nursing schools.

The Texas Center for Nursing Workforce Studies stated in a 2019 report that demand will outgrow the supply of registered nurses between 2018 and 2032 by 14.3%. The median turnover rate for registered nurses working in home health and hospice facilities in North Texas in 2017 was 26.1%.

Travis came to understand the stresses faced by hospice nurses in getting to know his nurse, who he learned bought a horse to help with the emotional effects of her job. The connection with her horse helped her to relax and deal with grief.

"As you'd expect, hospice patients and their nurses develop friendships," Travis wrote in a November 2020 journal entry. "I prefer substance to small talk anyway, so her weekly visits bring rich conversations between the stethoscope and prescription refills."

Financial barriers in hospice care

There are many barriers for families who want hospice care, including finances.

Hospice can be paid for with private insurance, Medicaid and Medicare. Jingle said most insurance plans have a hospice benefit, which is a change in the last decade.

The National Hospice and Palliative Care Organization stated there were 1.55 million Medicare patients who received hospice care in 2018.

Jingle said Community Healthcare of Texas does have some patients who self-pay and those who need assistance with payments.

Project 4031, created in 2011, helps patients and families going through end-of-life challenges with financial assistance and a wish program. The organization found that many patients and families need help with basic needs while they focus on end-of-life services.

Kristina Robertson, co-founder of Project 4031, said the organization saw an increase in people needing help with mortgage and rental payments after the pandemic began.

Sometimes a person may not have family support when receiving end-of-life services. Robertson recalled a client who had requested a washing machine, which was provided through the Project 4031 program. The woman wasn't able to travel to a laundromat, but still wanted to be independent in her home.

The organization served more than 100 patients in 2021, according to its annual report. The largest age group served included those between the ages of 50 and 89. Eight patients were under the age of 20.

"I feel like we are just skimming the surface, and there's such a great deal more that can be served for these families," Robertson said.

Star-Telegram reporter Ciara McCarthy contributed to this article.