{"id":10136,"date":"2017-04-17T08:56:22","date_gmt":"2017-04-17T14:56:22","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=10136"},"modified":"2022-09-16T10:42:08","modified_gmt":"2022-09-16T16:42:08","slug":"palliative-care-puts-patients-first","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/palliative-care-puts-patients-first\/","title":{"rendered":"Palliative care puts patients first"},"content":{"rendered":"
<\/div>

 <\/p>\n

\"Stacy
Stacy Ann Whitmire (right) with Holly Princevalle at UCHealth University of Colorado Hospital last October. Whitmire passed away two days after this photo was taken. Princevalle had medical durable power of attorney and worked closely with the Palliative Care team to ensure Whitmire got to hospice care before she died. Photo courtesy Holly Princevalle.<\/figcaption><\/figure>\n

On a Friday afternoon last October, a somber group gathered around a bed on the Oncology Unit at UCHealth University of Colorado Hospital.<\/p>\n

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.<\/p>\n

Among the group were health care providers from UCH\u2019s Palliative Care<\/a> team who had responded to a request for a consult from Whitmire\u2019s attending physician. Whitmire\u2019s 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<\/a>, an internist and board-certified palliative care specialist. Wolfe led the UCH team, which also included nurse practitioner Debra Davis<\/a> and chaplain William Jensen.<\/p>\n

\u201cWe were there to get to know Stacy and to help her define her goals for her care,\u201d 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.<\/p>\n

\u201cI 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,\u201d Wolfe said. \u201cWe were able to start the discussion of what she might want.\u201d<\/p>\n

Final decisions<\/strong><\/p>\n

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).<\/p>\n

In addition, Wolfe gave Whitmire the \u201cFive Wishes<\/a>,\u201d 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.<\/p>\n

Princevalle said the Palliative Care team also helped providers on the unit section off a portion of the waiting room to make Whitmire\u2019s loved ones more comfortable.<\/p>\n

\u201cWe spent a lot of time monitoring Stacy\u2019s pain levels,\u201d Princevalle said, adding that the Palliative Care team served as a liaison to Whitmire\u2019s physicians for her getting medications. \u201cIt was nice to have them in our corner.\u201d<\/p>\n

\"Stacy
Stacy Whitmire (right) on her birthday in 2013 with Holly Princevalle. Photo courtesy Holly Princevalle.<\/figcaption><\/figure>\n

The first meeting was only the beginning of a difficult conversation, Wolfe said. \u201cI didn\u2019t push too hard,\u201d 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.<\/p>\n

Meeting the end<\/strong><\/p>\n

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 \u2013 a border collie named Meena and a cat named Paco \u2013 one last time and to transfer from the hospital to hospice care.<\/p>\n

That evening, Whitmire\u2019s 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.<\/p>\n

As Princevalle described it, Meena got on the bed with Whitmire, who hovered at the edge of consciousness. \u201cShe woke up for a minute and smiled,\u201d Princevalle recalled. \u201cIt was the best thing [the team] did for us, giving that\u00a0moment to Stacy.\u201d<\/p>\n

Maack successfully expedited Whitmire\u2019s transfer to Denver Hospice Monday morning. Princevalle said she understood how little time her friend had. \u201cThe risk of the transport was huge,\u201d she said, \u201cbut I made the call to do it. I knew she would hang on.\u201d<\/p>\n

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.<\/p>\n

\"Dr.
Dr. Jeanie Youngwerth, director of the Palliative Care Service at UCH, says it\u0092s important to start conversations about advance care planning to ensure patients\u0092 end-of-life wishes are met.<\/figcaption><\/figure>\n

\u201cThey gave us some time to say good-bye,\u201d Princevalle said.<\/p>\n

Whitmire reached hospice and died there later that evening. She met death on her own terms. \u201cShe was surrounded by everyone she loved,\u201d Princevalle said.<\/p>\n

Princevalle still deeply mourns Whitmire\u2019s death, but is grateful she could help her fulfill her wishes.<\/p>\n

\u201cI didn\u2019t realize the importance of having the medical durable power of attorney,\u201d she said. \u201cYou can\u2019t really know until you go through it. It\u2019s a lot to ask of somebody, especially when it involves someone you are deeply close with. I knew Stacy didn\u2019t want to die in the hospital. The palliative care team went above and beyond in helping us to care for her.\u201d<\/p>\n

Wolfe called the response of the Oncology Unit \u201cspectacular\u201d 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.<\/p>\n

\u201cThings can move very quickly,\u201d she said. \u201cThis 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.\u201d<\/p>\n

Considerations of quality<\/strong><\/p>\n

In those cases, silence and uncertainty can add to the pain of death and loss, said Jeanie Youngwerth, MD<\/a>, a hospitalist and director of the Palliative Care Service at UCH. She notes that most people, when asked, say they don\u2019t want to die in a hospital. Yet that is the most common place where people do die.<\/p>\n

\u201cToo often we\u2019re not following their wishes because we\u2019re not talking with them about planning for how they prefer the end of their lives to look,\u201d Youngwerth said. \u201cAdvance care planning is a way to protect yourself and your loved ones. It\u2019s a gift to your family. In Stacy\u2019s case, her family didn\u2019t have to wonder about what she wanted. The end of Stacy\u2019s life became a meaningful time, where her family and the medical team were able to honor what was most important to her \u2013 to not die in the hospital, to see her pets again, and to be outside in the fresh air one more time.\u201d<\/p>\n

Youngwerth emphasized that advance care planning doesn\u2019t 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 \u2013 which can change over time \u2013 is the patient\u2019s.<\/p>\n

\"Internist
Internist and palliative care specialist Dr. Allison Wolfe helped a terminally ill patient define the things of most importance to her during her final days of life.<\/figcaption><\/figure>\n

\u201cOur 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,\u201d Youngwerth said. \u201cWe make sure the information is transmitted to the right people at the right time and that the wishes of the patient are respected.\u201d<\/p>\n

Home before hospital<\/strong><\/p>\n

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.<\/p>\n

\u201cMy prognosis is not long,\u201d 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\u2019d been admitted a week before after an exacerbation of his respiratory problems caused by an influenza B infection. \u201cI\u2019ve got one foot in the grave and another on a banana peel,\u201d he said.<\/p>\n

He gestured toward the room\u2019s bed, which was unused. \u201cI\u2019m shaped like a shrimp,\u201d he said. \u201cHospital beds are not designed for me.\u201d More broadly, he said, \u201cPeople do not thrive in the hospital.\u201d<\/p>\n

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\u2019s 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 \u2013 he\u2019d been able at times to reduce his bottled oxygen levels to 4 liters, he said \u2013 while helping him to meet his goal of staying at home as long as possible.<\/p>\n

Nonetheless, Harlow said he started planning for his death about two years ago with \u201cdo not resuscitate\u201d orders that he keeps on the door of his refrigerator to alert emergency medical techs if they respond to a call to his home.<\/p>\n

Practical considerations<\/strong><\/p>\n

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.<\/p>\n

Harlow called the team \u201cinformative but not pushy\u201d in helping him identify and meet his goals of care. \u201cThey found out what I knew and filled in the gaps,\u201d he said. \u201cI like having the freedom of choice in making decisions. I want to die on my own terms and with a degree of dignity.\u201d<\/p>\n

\"Duncan
Duncan Harlow has chosen care from home hospice in order to avoid death in the hospital. He\u0092s shown here during a recent stay at UCH, where he received palliative care.<\/figcaption><\/figure>\n

He spoke frankly of his diminishing respiratory system and the increasing breathing difficulties that lie ahead.<\/p>\n

\u201cI have a really good idea of what Mother Nature has in mind for me,\u201d Harlow said. \u201cI want to be able to have comfort and support.\u201d He also wants to relieve Dave of as much pressure as possible as his condition worsens.<\/p>\n

Health care providers must learn to listen for messages that patients like Harlow and Stacy Ann Whitmire deliver, Wolfe said.<\/p>\n

\u201cAs health care professionals, we strive so hard to cure that we sometimes overlook the person and what they truly want,\u201d she said. \u201cPalliative care gives patients an opportunity to say what that is. We can tailor care to the individual and treat all aspects of the condition.\u201d<\/p>\n

National Healthcare Decisions Day<\/em><\/a> 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 <\/em>Hospice & Palliative Care Association of the Rockies<\/em> website.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

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