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How patients and doctors prepare for end of life care for blood cancer patients

Clay Smith, MD, chief of the Division of Hematology at CU, enjoying a day in the mountains. Smith completed the advance care planning process three years ago to lessen the burden of decision-making on his family and encourages his patients to do the same.
Clay Smith, MD, chief of the Division of Hematology at CU, enjoying a day in the mountains. Smith completed the advance care planning process three years ago to lessen the burden of decision-making on his family and encourages his patients to do the same.

Clay Smith faces death many days.

Smith is associate chief of the Division of Hematology at the University of Colorado School of Medicine and director of the General Hematology, Blood Cancers and BMT Programs at UCHealth University of Colorado Hospital. He and his colleagues regularly treat and manage the care of patients with blood cancers such as leukemia, multiple myeloma and lymphomas.

While many survive through stem cell transplants, chemotherapy and radiation, the treatments can be painful, debilitating and isolating. Many don’t survive. The Leukemia and Lymphoma Society predicts that more than 58,000 people in the United States will die from blood cancers or complications from them this year.

Clay Smith has seen his patients die. Many of them struggled, along with their families and loved ones, in their final days to accept and come to terms with the prospect of death.

Until recently, however, Smith admits he didn’t directly face the reality of death himself.

“I’ve been in the field for 33 years,” he said. “In the early parts of it, I focused on medicine and science. I didn’t think about my own mortality.”

New perspective

That changed three years ago. Smith, now 58, began to consider the difficult moments he witnessed as a physician: patients and loved ones grappling with agonizing decisions, such as whether to continue treatments in the face of incapacitating physical decline or whether to remove a ventilator.

“I didn’t want my kids to struggle with that,” said Smith, who has two sons. “It was my responsibility as a parent to be sure my sons were never left with making those decisions.”

With that, Smith set up a living will, durable power of attorney (DPOA) and an advance-care directive to ensure that his wishes for end-of-life care were clearly stated. Reduced to the simplest terms, Smith said he will choose quality of life over quantity and reject extraordinary lifesaving measures.

No bright lines

Smith’s experience exposes one of medicine’s knottiest issues – and one that is felt especially keenly in the blood cancer field, where many patients teeter on the edge of recovery and decline, sometimes for years. Too often, Smith said, providers, patients and families view end-of-life discussions and advance care planning as code words for abandoning hope that disease can be conquered.

“When we talk about ‘getting our affairs in order,’ it’s sometimes mixed up with the idea that we are no longer devoting our energy to curing disease or prolonging life,” Smith said. “We can do both.”

The idea behind advance-care planning, he said, is that people should make decisions about how they wish to spend their final days before they become too ill to do so and the emotional turmoil that frequently accompanies dying engulfs their loved ones.

That’s just a matter of personal protection, Smith noted. As he put it, “Nobody buys car insurance thinking they are going to wreck.”

Jeanie Youngwerth, MD, Director of the Palliative Care Service at UCH, said Smith is a “great role model and advocate for advance-care planning.  He speaks openly, guiding patients in having the gift of conversation with families about their values and wishes.

Families often struggle with important decision making because advance-care planning conversations never happened, Youngwerth added. “It’s important to help patients and families prepare before times of crisis and make a plan that is based on their values.”

The provider dilemma

But providers aren’t exempt. They too grope for the best ways to meld lifesaving clinical care with advance-care planning. That is particularly true for those treating blood diseases, said Tanisha Joshi, PhD, a counseling psychologist and assistant professor of Medicine at CU. Joshi is “embedded” with Smith’s team and meets regularly with them, not only to discuss their patients’ needs, but also how their patients’ struggles affect them.

The challenges are twofold, Joshi said. First, the course of treatment for blood cancers can be very unpredictable – in general, more so than for solid tumors. Patients can hover at the edge of death, then recover. Others may show encouraging signs, then quickly go downhill. In addition, patients very often spend long stints in the hospital, particularly after stem cell transplants, which leave them immunocompromised and therefore at very high risk of infection. If the donor cells come from another individual, patients may also fall prey to graft-versus-host disease, wherein the body attacks what it perceives as foreign bodies.

Yet at the same time, rapid medical advances, such as immunotherapy, continue to offer hope and may spur both patients and providers to pursue care aggressively.

These uncertainties raise the risk of compassion fatigue and burnout for providers, Joshi said. They may also create conflicts among them in discussions of care plans.

“Nurses, psychologists, social workers and physicians may see cases in different ways,” Joshi said. Some may see aggressive, lifesaving care as fulfilling a duty to do everything possible on behalf of the patient; others may see that as futile and instead advocate for easing the patient’s suffering and improving quality of life in the final days.

“It places an emotional load on the team,” Joshi said.

Delicate balance

Elissa Kolva, PhD (left) and Tanisha Joshi, PhD, lead a CU study that aims to examine how end-of-life care is delivered at UCHealth University of Colorado Hospital and the effect that difficult blood disease cases have on providers.
Elissa Kolva, PhD (left) and Tanisha Joshi, PhD, lead a CU study that aims to examine how end-of-life care is delivered at UCHealth University of Colorado Hospital and the effect that difficult blood disease cases have on providers.

The volatile mix led Joshi and Elissa Kolva, PhD, assistant professor of Medical Oncology at CU, to launch a study of  patients at UCH. Kolva will be analyzing the type of care provided to patients, including the site of death; end-of-life counseling provided, if any; presence of advance care and do-not-resuscitate directives; numbers of emergency department visits and hospital readmissions; access to primary care, and more.

Joshi is conducting 60- to 90-minute interviews with providers, including physicians, advanced-care practitioners, inpatient and outpatient nurses, social workers, psychologists and survivorship coordinators. She will probe their perceptions of the care they provide and search for patterns in their responses. What were the challenges? How did it impact them personally? How do they take care of themselves emotionally? Did they have enough training to deal with difficult situations? What are the patient stories that stand out to them?

The work is ongoing and data analysis will follow, but the ultimate aim is to get a clearer picture of how the team is providing end-of-life care and the effect it is having on them. Joshi calls it “bringing torches to a dark tunnel. We want to understand what is the landscape.” The study’s title speaks to answering an even more fundamental question: “When Is Enough Enough?”

Kolva notes that research supports that providers treating blood disorders have trouble answering that question. In one survey for example, 55.9 percent of hematological oncologists who participated said they believed end-of-life discussions began “too late.”

“Our project builds from that finding,” Kolva said. “We want to provide a level of comfort for hematologic oncologists to have end-of-life conversations.”

Entering those conversations can be very difficult for providers, Kolva acknowledged. The power of medical technology, in the form of a new treatment or trial or another transplant, can make the prospects for a patient’s recovery tantalizingly close. “Most providers have seen a miraculous case,” Kolva said.

But providers must guard against allowing their commitment to treatment override patients’ values, she added. Jehovah’s Witnesses, for example, will not submit to blood transfusions. Use of stem cells collected from discarded umbilical cords may conflict with some individuals’ moral standards. Others may believe faith will deliver them from disease. These and other factors can influence end-of-life discussions, even as they challenge providers’ own beliefs, Kolva said.

“We love to pretend we know how people will feel at the end of life,” she said. “None of us know. We have to continue to check our feelings as providers when we feel we are pulling in one direction.”

For his part, Smith believes Joshi’s and Kolva’s work will lead other providers to think about the unthinkable, just as he did three years ago.

“This work will open conversations about the practice of advance-care planning and prompt providers to think more broadly about discussing end-of-life care,” he said.

 

 

 

 

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Palliative Care includes Creative Arts Therapy

 

A patient in the Natalie Kutner Palliative Care Creative Arts Therapy Program plays the guitar
A patient in the Natalie Kutner Palliative Care Creative Arts Therapy Program plays the guitar

After being diagnosed with cancer of the intestines in November 2016, Nick Gonzales was in and out of the University of Colorado Hospital (UCH) over a period of several months. By the time he began receiving palliative care, Nick and his wife Carol were stressed by multiple hospital visits and struggling to process his declining health.

They found relief through supplies you might not expect to find at a hospital—colored pencils and a camera.

Learn More

For information about the Creative Arts Therapy Program, contact Jean Kutner: Jean.Kutner@ucdenver.edu

To learn about ways to give, contact Cheryl Balchunas: 303-724-6871, Cheryl.Balchunas@ucdenver.edu

The Gonzales family participated in the Natalie Kutner Palliative Care Creative Arts Therapy Program, one of UCH’s newest approaches to care for people with serious illness. According to Program Director of the UCH Palliative Care Service Jeanie Youngwerth, MD, the program combines “the creative arts with therapy to make a patient feel like a person again.”

Nick and Carol used coloring and photographs taken by their art therapist to discover how creating art enables a patient to express deep and difficult feelings. “Poetry, art and music—they help to get your feelings out,” Nick Gonzales said. “It’s motivating, and I expressed more when I got involved with the program.”

His wife Carol agreed. “For me, coloring releases the stress of being in the hospital for so long.”

A personal connection to palliative care

The Natalie Kutner Palliative Care Creative Arts Therapy Program was created to honor the memory of Natalie Kutner—artist, medical social worker, Parkinson’s patient and the mother of Jean Kutner, MD, and CU Anschutz School of Medicine Professor of Medicine. Jean Kutner serves as a physician on the UCH palliative care team, and she played an instrumental role in starting the program.

Although she was already a palliative care physician when her mother’s health began to decline, being a family member of a terminally ill patient expanded Kutner’s perspective. “As a relative, I gained an even deeper appreciation of palliative care,” Kutner said. “The care team provided an extra layer of support that our family relied on.”

Untitled (House) by Natalie Kutner
Untitled (House) by Natalie Kutner

In the final stages of her disease, Natalie Kutner received eight months of palliative care. When Natalie died, Jean Kutner and her father designated the memorial donations for palliative care. Those funds and a generous anonymous donation made it possible to expand palliative care at UCH to include creative arts therapy.

Establishing a creative arts therapy program in Kutner’s honor resonated with her family because of Natalie’s volunteer work in the community and her legacy as an artist. When discussing her own work, she described the power art has to “transmute the ordinary into the extraordinary.”

Creators, not ‘reactors’

A similar transformation occurs in creative arts therapy at UCH, which helps patients cope with the existential pain of a terminal illness and communicate with their loved ones. “The program is an interdisciplinary approach to decreasing suffering and clarifying meaning,” Youngwerth said. “The therapists weave their skills and knowledge of art and music into their counseling and therapy.”

Palliative Care Art Therapist Amy Jones and Music Therapist Angela Wibben maintain a well-stocked “Art Cart” and an ample supply of musical instruments for patients and families.  “Sometimes patients have difficulty coping, overly identify with their disease or worry about leaving their children and grandchildren,” Wibben said. “Creative art therapy expands their definitions of themselves.”

Patient art becomes part of the legacy they leave for their families. One young mother with cancer constructed a bird’s nest out of weaving materials. She included a ceramic egg for each of her children and pebbles to represent the years she spent with her husband. “Creative art therapy looks at a person’s whole life,” Jones said. “It looks for metaphors that ease suffering beyond the reach of words.”

Wibben agrees. “Experiential music therapy may begin by listening to music and lead to a conversation that reveals what music means in our lives,” she said. “That might lead to songwriting, which makes the patient a creator, not a ‘reactor.’”

Turning a life into a legacy

Photographs of Nick and Carol Gonzales' hands, taken by their art therapist Amy Jones
Photographs of Nick and Carol Gonzales’ hands, taken by their art therapist Amy Jones

For Nick and Carol Gonzales, the couple found art creation to be relaxing, but their therapy also brought them closer together. When they left UCH, they took their artwork, as well as Jones’ photographs of Nick and Carol’s hands.

The photographs are a part of Nick’s legacy. “The pictures are really expressive,” Carol Gonzales said. “Seeing his hand over mine—I think of how he protected me.”

“Palliative care is not just medication, it’s emotional and spiritual help,” Nick Gonzales said. “When you share, it helps to heal. I look at those pictures of our hands, and I think of Carol and me taking care of one another.”

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