On a Friday afternoon last October, a somber group gathered around a bed on the Oncology Unit at UCHealth University of Colorado Hospital.
They were there to listen to 28-year-old Stacy Ann Whitmire of Colorado Springs, who was losing her life to metastatic melanoma. Whitmire, they knew, would have little control over the time of her death. Their goal was to help her define the terms of it.
Among the group were health care providers from UCH’s Palliative Care team who had responded to a request for a consult from Whitmire’s attending physician. Whitmire’s parents, Brian and Sherri; nephew Evan; sister Sheresa; boyfriend Matt Stenson; and best friend Holly Princevalle joined them. The conversation that followed had no predetermined end, said Allison Wolfe, MD, an internist and board-certified palliative care specialist. Wolfe led the UCH team, which also included nurse practitioner Debra Davis and chaplain William Jensen.
“We were there to get to know Stacy and to help her define her goals for her care,” said Wolfe. She explained to Whitmire and her loved ones that the point of palliative care is not to cure disease but rather to manage symptoms and help to give the patient physical and emotional comfort.
“I said that these are difficult decisions that we would need to navigate together, and I wanted to make sure we were all on the same page,” Wolfe said. “We were able to start the discussion of what she might want.”
Final decisions
Wolfe and her team helped to lay the groundwork to make that happen. Whitmire had previously decided that Princevalle would make medical decisions on her behalf if she were unable to, with Sheresa as the backup. Wolfe got that written down to ensure Princevalle had medical durable power of attorney (MDPOA).
In addition, Wolfe gave Whitmire the “Five Wishes,” a living will that serves as an advance care directive. Individuals use it to specify their medical decision maker, type of medical treatment and level of comfort they desire and other important terms for defining the remainder of their lives.
Princevalle said the Palliative Care team also helped providers on the unit section off a portion of the waiting room to make Whitmire’s loved ones more comfortable.
“We spent a lot of time monitoring Stacy’s pain levels,” Princevalle said, adding that the Palliative Care team served as a liaison to Whitmire’s physicians for her getting medications. “It was nice to have them in our corner.”
The first meeting was only the beginning of a difficult conversation, Wolfe said. “I didn’t push too hard,” she said. The Friday meeting, however, nudged Whitmire to clarify what she valued most: her family, friends, and pets. Ultimately, she was to exercise her right to decide how and where she would live her last days.
Meeting the end
As it turned out, the discussion came none too soon. Wolfe saw Whitmire again the next day, Saturday, and spoke with her more openly about her deteriorating condition. She asked Whitmire if she had thought about her death and how she envisioned it. By Sunday, Whitmire had decided against aggressive life-prolonging measures and communicated that to Princevalle. She also expressed a desire to see her pets – a border collie named Meena and a cat named Paco – one last time and to transfer from the hospital to hospice care.
That evening, Whitmire’s condition deteriorated, and she became delirious, Wolfe said. With time short, social worker Katherine Maack, LCSW, hurriedly started arrangements for a transfer to Denver Hospice. The Oncology Unit staff arranged to wheel Whitmire into the solarium at the end of the floor and to bring in her dog for a final visit.
As Princevalle described it, Meena got on the bed with Whitmire, who hovered at the edge of consciousness. “She woke up for a minute and smiled,” Princevalle recalled. “It was the best thing [the team] did for us, giving that moment to Stacy.”
Maack successfully expedited Whitmire’s transfer to Denver Hospice Monday morning. Princevalle said she understood how little time her friend had. “The risk of the transport was huge,” she said, “but I made the call to do it. I knew she would hang on.”
On the way from the unit to the ambulance, staff made one more small but meaningful stop. They wheeled Whitmore into the gardens outside the hospital for a few final moments in the sun and air.
“They gave us some time to say good-bye,” Princevalle said.
Whitmire reached hospice and died there later that evening. She met death on her own terms. “She was surrounded by everyone she loved,” Princevalle said.
Princevalle still deeply mourns Whitmire’s death, but is grateful she could help her fulfill her wishes.
“I didn’t realize the importance of having the medical durable power of attorney,” she said. “You can’t really know until you go through it. It’s a lot to ask of somebody, especially when it involves someone you are deeply close with. I knew Stacy didn’t want to die in the hospital. The palliative care team went above and beyond in helping us to care for her.”
Wolfe called the response of the Oncology Unit “spectacular” in helping Whitmire and her loved ones achieve a measure of dignity and comfort in death. The example illustrates how important it is for patients to think about and plan for death, which follows no timetables, Wolfe added.
“Things can move very quickly,” she said. “This case stands out because we had enough of a conversation when Stacy was able to express herself to her family and make her final wishes come true. We sometimes see patients who make no decisions or waver before their condition escalates.”
Considerations of quality
In those cases, silence and uncertainty can add to the pain of death and loss, said Jeanie Youngwerth, MD, a hospitalist and director of the Palliative Care Service at UCH. She notes that most people, when asked, say they don’t want to die in a hospital. Yet that is the most common place where people do die.
“Too often we’re not following their wishes because we’re not talking with them about planning for how they prefer the end of their lives to look,” Youngwerth said. “Advance care planning is a way to protect yourself and your loved ones. It’s a gift to your family. In Stacy’s case, her family didn’t have to wonder about what she wanted. The end of Stacy’s life became a meaningful time, where her family and the medical team were able to honor what was most important to her – to not die in the hospital, to see her pets again, and to be outside in the fresh air one more time.”
Youngwerth emphasized that advance care planning doesn’t require a lawyer. Patients and loved ones should work to complete living wills, MDPOA forms and other documentation with their health care provider, she said. The final word – which can change over time – is the patient’s.
“Our job as palliative care providers is to learn the values and priorities of the patient, and what they define as having a good quality of life, even when living with a serious illness,” Youngwerth said. “We make sure the information is transmitted to the right people at the right time and that the wishes of the patient are respected.”
Home before hospital
Duncan Harlow, 66, is adamant in his desire to avoid death in the hospital. He suffers from ankylosing spondylitis, a debilitating form of arthritis of the spine, and chronic obstructive pulmonary disease. He normally requires 6 liters of oxygen to help him breathe while at rest and said he spends much of his time at home in an executive chair that can accommodate his deformed spine.
“My prognosis is not long,” Harlow said on a recent morning as he sat in a chair in his room on the Medical Surgical Progressive Care Unit at UCH. He’d been admitted a week before after an exacerbation of his respiratory problems caused by an influenza B infection. “I’ve got one foot in the grave and another on a banana peel,” he said.
He gestured toward the room’s bed, which was unused. “I’m shaped like a shrimp,” he said. “Hospital beds are not designed for me.” More broadly, he said, “People do not thrive in the hospital.”
Until the flu floored him, Harlow said he received in-home care from a nurse practitioner with Halcyon Hospice and Palliative Care as well as primary care at UCHealth’s A.F. Williams Family Medicine Clinic and respiratory care from UCH Pulmonology Fellow Jonathan Kurche, MD. A combination of antibiotics and steroids improved his breathing – he’d been able at times to reduce his bottled oxygen levels to 4 liters, he said – while helping him to meet his goal of staying at home as long as possible.
Nonetheless, Harlow said he started planning for his death about two years ago with “do not resuscitate” orders that he keeps on the door of his refrigerator to alert emergency medical techs if they respond to a call to his home.
Practical considerations
He decided with his brother Dave, who has MDPOA, to arrange for home hospice. He did so with the help of the Palliative Care team, led by Nikki Rondinelli, FNP, at UCH during his April hospital stay. Social worker Megan Beard worked with Halcyon to arrange the hospice care.
Harlow called the team “informative but not pushy” in helping him identify and meet his goals of care. “They found out what I knew and filled in the gaps,” he said. “I like having the freedom of choice in making decisions. I want to die on my own terms and with a degree of dignity.”
He spoke frankly of his diminishing respiratory system and the increasing breathing difficulties that lie ahead.
“I have a really good idea of what Mother Nature has in mind for me,” Harlow said. “I want to be able to have comfort and support.” He also wants to relieve Dave of as much pressure as possible as his condition worsens.
Health care providers must learn to listen for messages that patients like Harlow and Stacy Ann Whitmire deliver, Wolfe said.
“As health care professionals, we strive so hard to cure that we sometimes overlook the person and what they truly want,” she said. “Palliative care gives patients an opportunity to say what that is. We can tailor care to the individual and treat all aspects of the condition.”
National Healthcare Decisions Day is April 16. It begins a weeklong event aimed at helping people understand the importance of advance care planning. For more about events in Colorado, visit the Hospice & Palliative Care Association of the Rockies website.