Health Communication
ISSN: 1041-0236 (Print) 1532-7027 (Online) Journal homepage: http://www.tandfonline.com/loi/hhth20
The Cost of Care Carey Candrian To cite this article: Carey Candrian (2015) The Cost of Care, Health Communication, 30:7, 732-736, DOI: 10.1080/10410236.2014.930771 To link to this article: http://dx.doi.org/10.1080/10410236.2014.930771
Published online: 10 Feb 2015.
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Article views: 81
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Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=hhth20 Download by: [University of Cambridge]
Date: 05 November 2015, At: 12:53
Health Communication, 30: 732–736, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 1041-0236 print / 1532-7027 online DOI: 10.1080/10410236.2014.930771
DEFINING MOMENT
The Cost of Care Carey Candrian
Health Communication 2015.30:732-736.
Division of General Internal Medicine University of Colorado School of Medicine
The cost of reimbursement that we are getting from the government doesn’t even come close to covering our cost. We had to close our inpatient hospice unit because we did not want to give substandard care. It’s very frustrating . . . but I understand the public would rather spend health-care money on people who can recover. (President of Hospice, 2013)
The founder of the hospice movement, Dame Cicely Saunders, wrote compellingly about her conversations with patients that led to the opening of the first teaching hospice, St. Christopher’s in London, in 1967. She explained how listening to a patient’s suffering is therapeutic; as one patient told her, “it seemed the pain went away with me talking” (Saunders, 2003, pp. 4–6). It was this same intentional listening to patients’ voices that inspired the opening of the first U.S. hospice, Connecticut Hospice, in 1974 by Florence Wald, and the opening of subsequent hospice programs all across the country (Ragan, Wittenberg-Lyles, Goldsmith, & Sanchez-Reilly, 2008). From a funding perspective, hospice has been shaped by U.S. reimbursement legislation and since 1983 the Medicare program has included a hospice benefit. Eligibility for hospice requires (a) a life expectancy of 6 months or less and (b) goals of care that focus on comfort and symptom management rather than cure (Abernethy et al., 2013). If patients have a terminal illness by this definition (i.e., less than 6 months to live), Medicare pays roughly $172 per day for patient care (Medicare Payment Policy, 2009). If patients do well, however, meaning they live beyond 6 months, hospices can potentially get penalized. Moreover, the low level of payment from Medicare puts pressure on many facilities to engage in extraordinary levels of fundraising in order to maintain both quality of care and access for those who do not qualify for Medicare or another hospice benefit. Correspondence should be addressed to Carey Candrian, Division of General Internal Medicine, University of Colorado School of Medicine, Aurora, CO 80045. E-mail: [email protected]
The number of hospice programs grew from 1,545 in 1985 to 5,150 in 2010 (Abernethy et al., 2013). Compelling research demonstrates that hospice and palliative care consultations significantly improve care for adults with serious illness while lowering costs (Morrison, Cassel, Litke, Spragens, & Meier, 2008). Meanwhile, payment cuts for the chronically ill and elderly are increasing. Consequently, a detailed understanding is needed to illustrate the tensions and complexities surrounding end-of-life care, including the fact that hospice, despite its altruistic intentions and irreplaceable brand of care, is not immune to financial pressures being put on the whole health care system, nor is it immune to scrutiny regarding the eligibility of individuals accepted into hospice care. In addition to scrutiny and the closing of hospices in California and Delaware, a Colorado hospice has long been in the hot seat. St. Paul Hospice (SPH), one the nation’s oldest inpatient centers, opening in 1977, closed its 44bed inpatient unit in 2013. It didn’t take long for critics to start providing solutions to what went “terribly awry” in the last year. State health inspectors spent the better half of 2012 watching central operations and declared that the hospice owed at least $1.2 million to creditors and owed $90,000 to the pharmacy that supplied the pain medications needed by almost all the patients (Blasius, 2013). Not surprisingly, it had trouble making payroll. The president of SPH said, “We had the worst of all worlds. Costs are going up, reimbursements going down. Medicare asked for more documentation; there were reimbursement delays. And the loss of government funding caused a two percent reduction in payments to medical facilities.” Since the closure, SPH has been criticized for using hospice dollars to cover staff lunches and generating a somewhat “embarrassing” track record for fundraising. In local papers, the president of SPH reassures the families, staff and community that “I tried the best I could with what I had, given the circumstances.” I feel a strong connection to SPH. As an ethnographer, I volunteered there during 2008–2010. During my time, SPH
Health Communication 2015.30:732-736.
THE COST OF CARE
was already facing enormous funding challenges, but never were the budget cuts reflected in the exceptional care that was provided. SPH was a special place. Its closing was devastating because hospice care programs and facilities across the world take care of our universal fears—pain, suffering, and loneliness. And they do so on razor-thin budget margins in ways not always seen, heard, or understood. I drove to SPH every Friday afternoon to wheel the hospitality cart, which is an office-like cart full of unhealthy snacks, soda, alcohol, and ice cream. I connected with patients. Families comforted me while I comforted them. I met new people and developed short- and long-term relationships with patients. Many hugged me, some yelled at me, several could not see me, others couldn’t hear me, and a few had lost their capacity to say anything to me. But all were taken in and cared for during their last months, days, and minutes by people who were, essentially, strangers. SPH, like many hospices, accepted patients no matter their financial situation, religion, or race. SPH was continuously rewarded for having the highest chaplain-to-patient ratios in the country to ensure that terminally ill patients would never have to die alone. I remember being asked on Friday afternoons to stay longer or come the next morning because a patient had been put “on watch” and that patient’s family was not around to be by his or her side. What follows is a series of personal reflections that outline some of the implications funding is having on care and care programs, especially for aging and dying individuals. I want you to get a feeling for what SPH was like in order to understand the potential losses associated with budget cuts. ENTERING SPH FOR THE FIRST TIME “Hi, I am coming for orientation and think I am lost,” I said. “Turn on Ellis Lane,” the woman at the front desk kept saying over the phone. “I am passing Safeway—did I go too far?” “Yes, turn around and take your second right. You will see a small street sign and below it says, no outlet.” Two tiredlooking apartment complexes with boarded windows, people smoking on the stoops, and balconies with signs advertising “reduced rent” lined both sides of Ellis Lane. I saw the chapel first; then two cream-colored buildings with low windows appeared on the left and right sides. A faded American flag waved gently above the parking lot. Bird feeders lined each patient window, some full of seed, some not. There was a smoking lounge by the main entrance that I passed walking in. As the glass door closed behind me and I took a breath, the smell of astringent (and every other nonnatural household cleaning product) burned the back of my throat. “Hello. Are you here for orientation?” “Hi. Yes, I am.” Standing up and walking to the hall with me, she said, “Head down this hallway and when it ends, take a right, cross
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the parking lot and when you come into the following wing, follow the patient hallway and there is a conference room all the way down on the left. If you get lost, ask the nurse’s station. And have a good time.” “Okay, thank you.” My new-hire orientation started at 8 a.m. and ended at 5 p.m., lunch included. We covered several topics and heard directors describe the history of SPH, hospice and palliative care philosophies and concepts, complementary therapies, infection control, safety, pastoral services, social services, cultural care, dietary-comfort kitchen, death and dying, bereavement, communication, and pain management. Slowly, I began to share a similar vision of hospice shared by many who walked the halls: There is something beautiful about the final days of life. A week later and high on SPH’s mission, I started my six hours of floor training pushing the hospitality cart. Two weeks after that, I started volunteering. I went in to every room where patients weren’t being bathed or sleeping, or were not “on watch.” I enjoyed this work a lot, and for the most part, patients enjoyed talking to me while wondering why someone so young would volunteer at hospice. After each shift, in recycled white three-ring binders, I documented what patients had to drink, what they had to eat, and anything interesting or unusual about their current mood. Documenting took me about an hour after pushing the cart. I was always alone in the volunteer room at this time on Friday evening and no matter how fast I tried to write, many of their “stories” on paper (i.e., poignant facts from volunteer patient files) slowed me down. Some that stood out in particular (note that this is not from one chart but a combination of them) were: Date of birth: Married: Address: Admitted from: Arrival: Diagnosis: Family:
1990 2009 none Emergency Department Taxi failure to thrive 3 kids, 6 grandkids
Sometimes there was a short bio describing a patient’s life, hobbies, previous professions, and anything else the family wanted SPH to know. Sometimes we knew nothing about a patient beyond age, name, and illness. After about eight months of pushing the hospitality cart, things at hospice began to feel and look a little different. I was overwhelmed, seeing and hearing patients’ unending pain, confusion, and loneliness. The nurses I interviewed and the training I went through reiterated the naturalness of death and in many cases the beauty of a “good and peaceful” death, but I could not see it as clearly. For the next year, I continued opening ginger-ale cans and bags of Doritos for patients, and attended most SPH activities—wreath decorating, llama visiting, pet therapy, holiday carolers, art activities—which provided a stable
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source of weekly interaction and conversation. I walked a fine line between opening the soda can, or bag of chips, and letting patients do it themselves, knowing their mobility skills were declining yet also aware that opening a can, a straw, or a bag of chips was one of the few things many patients could still control. Similarly, I endlessly felt pulled in wanting to spend hours with patients because of the relationship I had with many of them while knowing I wanted to get back to my own family. But I was only there one afternoon per week; the nurses were there on a daily basis, and patients could never leave.
Health Communication 2015.30:732-736.
RESPONDING TO DEATH ON A DAILY BASIS Marty, who had short dark hair, deep brown wrinkles, and soft skin, grew up on the East Coast and had been living at hospice for more than six months, and was usually in her wheelchair folding napkins or knitting when I arrived early on Fridays. For that reason, I would usually prepare her drink first because she had the same request every week: half wine, half water, and a piece of chocolate as a chaser. I had arrived a little late (on time) so Marty was already in her room, lying down on the bed and smiling as we made eye contact. I walked in. “Hi, Marty.” “Do you have my wine?” “Yes, I do.” Her head and body curled liked a worm in excitement. “Oh, good. And some chocolate and nuts too?” “I forgot the nuts!” I walked back to the cart outside the door to take a small bag of nuts, running into Charleene, one of the nurses. “Is it OK for Marty to have nuts?” “Yes but she needs her teeth and I need to elevate the bed while she has her wine.” “Okay, great.” Marty usually drinks the wine in one sip and then follows with a piece of chocolate. We mix the wine with half water because, like anybody would, she used to get sick drinking a full glass of wine in one sip. Charleene and I walk back in together and Marty has her hand out to accept the wine. “Hold on, my dear, let me lift you up,” Charleene says, and Marty gives her a subtle stare-down. “Hey, just so you don’t choke, sweetie.” I am holding the nuts and chocolate as Marty says, “I need my teeth.” “Yes, you do. I will get them.” Charleene walks over to the restroom, turns on the sink and then walks back with a full set of teeth that are still wet after being rinsed. “Are they clean?” Marty asks. “Yes, they are, my dear,” as Charleene hands her the top set, and then the bottom set. “Do they feel okay?” Marty takes the wine and puts the chocolate and nuts next to her.
“You’ve been asking about the wine since 11 a.m., Miss Marty!” Marty gives us both a huge smile, nodding her head up and down. Charleene puts her hand on Marty’s shoulder giving her a quick rub and says, “I’ll be in again soon to clean you up for dinner, honey.” Marty nods. “Enjoy, Marty. I’ll stop by before I leave,” I say as I touch her leg and give her ankle a small squeeze. Marty died four months later. During her 12 months at SPH, she fell in love with Bill, who arrived around the same time she did and died a month before Marty. I have countless stories like this that illustrate the emotional fatigue of responding to death on a daily basis and the many ways staff adequately fulfill the diverse needs of patients and their family members in light of unique and limited resources.
FINAL WEEKS AT SPH I started in room 101, where Hannah ordered a Coke. John in room 102 had no request. I asked Arnie in 103 twice whether he wanted anything because he had changed his mind in the past. He said, “Get your ass over here to hear that I don’t want anything.” I would have probably said the same thing if I were sitting there in that same bed and someone healthy and happy walked through those doors offering me a soda or chips more than once. Leaving Arnie’s room I looked across the hall into 104 and saw Hank. He was an older man, balding, mouth frozen yet open slightly and a tracheostomy inserted in his throat with the machine working next to him. A nurse was filling water and I asked her if I should enter. She shook her head. “No, I am pretty sure they just put him ‘on watch.’” I waited as she walked to the nurses’ station, watching Hank breathe slowly by himself in the dark room. “Yes,” she said. “He just went on watch.” “Ugh, that’s sad,” I said softly, not thinking any one would hear. The nurse turned around and said, “Yeah, hopefully he’ll make it through Easter.” I looked back at her and said, “I hope he gets to go sooner; he doesn’t look very good.” “Yeah, I guess so,” she said. “I’m praying for the instant car accident, train wreck and so on kind of way out.” I nodded my head and said, “Yeah, me too.” Betty in room 105 had no request, and Gretel in 106 had her usual glass of Chardonnay. Tom from room 107 and Rick from 112 were in the smoking lounge and both wanted a Bud Light. Marvin in room 108 was also “on watch.” Jessie in room 109 had a devastating disease and was limited to a feeding tube. His wife was always there and took a few diet sodas and extra Fritos or Cheetos from the cart. She was missing several teeth and always told me how exhausted she was, working mornings and nights at her two jobs and then coming here in the afternoons to be with her husband.
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Rooms 113a and 113b were empty. Harri was in room 114. I knew she didn’t have very good eyesight per the nurse’s note and my encounter with her the previous week. She stared at one place no matter where I walked, so it was important I started speaking as soon as I knocked so she knew who was there. She was sitting on the edge of the bed watching “Ellen” on TV but didn’t want anything from the cart. The note on my chart said, “Harri is becoming confused about why she is at hospice and if she is dying. Please help her process by actively listening and using open-ended questions.” Across the hall in 115, Lucy’s door was closed but the nurse walked out and said one of the visitors would love a Diet 7Up. I handed her one and wheeled the cart toward room 116, where a nurse was communicating with Nora using paper and pen. I waited by the door and knocked quietly. The patient looked at me and then the nurse turned around and said, “Oh, no thank you.” I walked out and a visitor was walking in. “Do you care for anything?” I said. She looked at me, shook her head no and kept walking. Room 117 was empty, and so were beds 118a and 118b. Next side. Before I walked to the next side, I stopped at the main office to see whether there was any mail to take over. And there was, including a box of flowers for Lee in room 203. Lee’s door was closed when I got there and three adults, each with a notepad and pencil, were surrounding Lee’s bed. I peeked in and caught one woman’s eye; her head moved sideways to signal no. I scurried away, left the flowers with the nurse to deliver, and put the mail on the cart. I started in 201, Joan’s room: Joan, who almost always was sleeping with her mouth open and feet exposed in a pigeon-toe position. She had the most beautiful white hair and olive skin. I never saw her eyes open, or heard her speak. Room 202 was empty. The visitors in Lee’s room had left so I knocked, was waved in, and delivered the mail. She was cutting her flowers and I asked whether she or any of the new visitors cared for something to drink. “Want a gin and tonic, Lee?” “Sure, I guess,” she said. “But in a plastic cup”—pointing to the one on her night stand—“with a little gin and the rest tonic.” “Anything else?” I asked. “I’d love a glass of Cabernet,” one woman said. “Sure, I’ll be back soon.” I went back to the closet to get the gin, tonic, and plastic cup. I walked back and placed Lee’s drink on the table and handed the wine to the visitor and walked out. Charlotte was on the phone across the hall but not for long. She couldn’t get the phone on the receiver so I walked in and moved the blankets that were blocking her angle so she could put the phone down. “Hey, Charlotte. How are ya?” “Oh, so far so good,” she said, which was what she always said to me.
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“What’s new?” I said. “Nothing really, except I am so tired of people always wanting to clean me. The nurse was in here two hours ago and she just came in to say she needed to clean me again. And I told her, I am not dirty, I’m tired and I want to sleep! It’s like she has nothing else to do!” “Did you tell her you don’t want to be cleaned?” “Yes, several times but no one listens and you can’t do anything here; they are always cleaning me up.” “Maybe she just really likes you, Charlotte.” She laughed. “Yeah, maybe I need to start being mean to these people so they leave me alone.” “Well, how about a 7Up or ginger ale from the cart?” “Yeah, 7Up sounds real good.” I opened the can and poured it over ice while we talked about her son who told her he would visit every day for the last month. He hadn’t showed up since she arrived at hospice four months ago but had recently sent the last small box of her belongings from her house that had been sold. Inside the box were two things: a porcelain figure of Jesus Christ, and a Virgin Mary made of wood. She asked me to set them both on top of the TV and make sure they would never fall. Maria in room 205 was on watch. Jan in 206 was visiting with another volunteer so I kept walking. Jay in 207, who is diabetic, asked for pork skins. I told him I didn’t have any on the cart and he asked if I could please go to the market between now and next Friday so he could have some. I assured him that I would. He opted for Fritos and a Pepsi. Room 208 was empty. Mary, in room 209, was sleeping but I had mail for her so I left it on her table next to a frame that displayed several photos of her grandkids. Rooms 210, 212, 214, and 216 were also empty. And Keith, in 218, had just been put on watch and a volunteer was on the way in to be with him, since his family was not around. Room 220 was empty. For the first time Violet, in room 222, was awake. She also had mail, so I set it on her table and offered her a ginger ale since her daughter had told me that is her favorite. “Hi, Violet. I have some mail.” “Some milk, great; sit down.” I stayed standing. “How are you?” She laughed. “Let’s not have chicken tonight.” “Okay,” I said, “no chicken.” “Yeah, we’ve had it too much,” and she mumbled a few things after. “Are you coming to dinner?” she said. “Well, no, I can’t because I have to go home and eat there.” “Okay, sit down, have some milk, maybe some cream,” as she reached for the table. “Can I get you something?” I said. “Sit down,” she said. I walked closer and said, “Okay, but would you like some ginger ale?” “Some milk? Why don’t we have hot dogs for dinner and we’ll have,” and she mumbled some other things.
Health Communication 2015.30:732-736.
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“I can’t stay for hot dogs but your dinner will be here soon.” “Why can’t you stay?” “I am meeting my sister for dinner.” I didn’t know what to say but we’ve been trained at hospice to follow the conversation. And I never realized how much power “I need to go home” held until I said it, in this moment. “Yeah, your son, I mean grandson is dating someone so you better go.” I smiled and told her I’d see her soon. Her slipper had fallen off so I went to put it back on but she shook her head no so I took the other one off too and she smiled. I touched her foot to say goodbye and she looked startled and stared for a minute at where I had touched her sock. I said bye again; she looked up, said bye, and laughed. Sally in room 223 and Nancy in 225 were sleeping so I wheeled the cart back to its place and walked across the black asphalt parking lot to document each patient in the white binder back in the volunteers’ office. I left hospice at 4:45 p.m. that Friday night and drove down Ellis Lane with my windows down, yet another thing I took for granted. I turned on my tape recorder and talked into it during my drive home. The silence at hospice rattled my soul up and down. Patients’ bodies swollen, bandaged, wrinkled, white, bald, blind, deaf, cold, smelly, motionless, and crippled stayed with me after I left the facility. At hospice, I saw how illness and age literally take over bodies, skin, and minds every week. But it wasn’t death that I feared at hospice: I fear pain, losing control, and feeling lonely.
DEFINING MOMENTS IN HOSPICE CARE Caring organizations like hospice and palliative care programs manage the symptoms that aren’t always visible but are arguably the most important at any stage of life. The struggles to provide care with limited resources are not uncommon in health care, nor are the struggles around funding decisions. Consequently, hospice programs will continue to see the effects of budget cuts on people who can’t afford to be affected. My hope is that these reflections do several things. First, I hope they underscore the implications of funding on quality
of care and care programs, especially related to the elderly. In doing so, I hope they instill some courage for all of us to do better with some of the frailest humans of our population: the same population that many are scared to be around, for fear of catching something, or not knowing what to say. Second, I hope they remind us that we can take better care of care providers. Be curious about what they do, and why they do it. Ask questions and listen to them; be patient, connect with them, and even share a hug. Third, I hope they teach us the importance of spending time volunteering in these facilities. Have a conversation with family members about their hospice experiences. Volunteering is both a means for individuals to connect with social issues and a way of sustaining nonprofit organizations. And when you’re volunteering, there is actual evidence that volunteers are happier, have fewer depressions, like to talk about their work, and live longer than people who don’t volunteer (Gasiorek & Giles, 2013). Finally, I hope the therapeutic effect of listening to a patient’s suffering that led to the opening of the first teaching hospice will serve as a model for the way we respond to suffering and frailty. We can do better, on all levels. REFERENCES Abernethy, A. P., Bull, J., Whitten, E., Shelby, R., Wheeler, J. L., & Taylor, D. H. (2013). Targeted investment improves access to hospice and palliative care. Journal of Pain and Symptom Management, 46, 629–639. doi:10.1016/j.jpainsymman.2012.12.012 Blasius, M. (2013, November 7). Closed Hospice of Saint John criticized for spending, patient care. Retrieved from http://archive.9news. com/news/article/363398/222/Closed-hospice-criticized-for-spendingcare Gasiorek, J., & Giles, H. (2013). Communication, volunteering, and aging: A research agenda. International Journal of Communication, 7, 2659– 2677. Medicare payment policy: Report to Congress (MEDPAC). (2009). http:// www.medpac.gov Morrison, P., Cassel, C.-E., Litke, A., Spragens, L., & Meier, D. E. (2008). Cost savings associated with US hospital palliative care consultation programs. Archives of Internal Medicine, 168, 1783–1790. doi:10.1001/archinte.168.16.1783 Ragan, S. L., Wittenberg-Lyles, E. M., Goldsmith, J., & Sanchez-Reilly, S. (2008). Communication as comfort: Multiple voices in palliative care. New York, NY: Routledge. Saunders, C. (2003). A voice for the voiceless. In B. Monroe & D. Oliviere (Eds.), Patient participation in palliative care: A voice for the voiceless (pp. 3–8). Oxford, UK: Oxford University Press.
ISSN: 1041-0236 (Print) 1532-7027 (Online) Journal homepage: http://www.tandfonline.com/loi/hhth20
The Cost of Care Carey Candrian To cite this article: Carey Candrian (2015) The Cost of Care, Health Communication, 30:7, 732-736, DOI: 10.1080/10410236.2014.930771 To link to this article: http://dx.doi.org/10.1080/10410236.2014.930771
Published online: 10 Feb 2015.
Submit your article to this journal
Article views: 81
View related articles
View Crossmark data
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=hhth20 Download by: [University of Cambridge]
Date: 05 November 2015, At: 12:53
Health Communication, 30: 732–736, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 1041-0236 print / 1532-7027 online DOI: 10.1080/10410236.2014.930771
DEFINING MOMENT
The Cost of Care Carey Candrian
Health Communication 2015.30:732-736.
Division of General Internal Medicine University of Colorado School of Medicine
The cost of reimbursement that we are getting from the government doesn’t even come close to covering our cost. We had to close our inpatient hospice unit because we did not want to give substandard care. It’s very frustrating . . . but I understand the public would rather spend health-care money on people who can recover. (President of Hospice, 2013)
The founder of the hospice movement, Dame Cicely Saunders, wrote compellingly about her conversations with patients that led to the opening of the first teaching hospice, St. Christopher’s in London, in 1967. She explained how listening to a patient’s suffering is therapeutic; as one patient told her, “it seemed the pain went away with me talking” (Saunders, 2003, pp. 4–6). It was this same intentional listening to patients’ voices that inspired the opening of the first U.S. hospice, Connecticut Hospice, in 1974 by Florence Wald, and the opening of subsequent hospice programs all across the country (Ragan, Wittenberg-Lyles, Goldsmith, & Sanchez-Reilly, 2008). From a funding perspective, hospice has been shaped by U.S. reimbursement legislation and since 1983 the Medicare program has included a hospice benefit. Eligibility for hospice requires (a) a life expectancy of 6 months or less and (b) goals of care that focus on comfort and symptom management rather than cure (Abernethy et al., 2013). If patients have a terminal illness by this definition (i.e., less than 6 months to live), Medicare pays roughly $172 per day for patient care (Medicare Payment Policy, 2009). If patients do well, however, meaning they live beyond 6 months, hospices can potentially get penalized. Moreover, the low level of payment from Medicare puts pressure on many facilities to engage in extraordinary levels of fundraising in order to maintain both quality of care and access for those who do not qualify for Medicare or another hospice benefit. Correspondence should be addressed to Carey Candrian, Division of General Internal Medicine, University of Colorado School of Medicine, Aurora, CO 80045. E-mail: [email protected]
The number of hospice programs grew from 1,545 in 1985 to 5,150 in 2010 (Abernethy et al., 2013). Compelling research demonstrates that hospice and palliative care consultations significantly improve care for adults with serious illness while lowering costs (Morrison, Cassel, Litke, Spragens, & Meier, 2008). Meanwhile, payment cuts for the chronically ill and elderly are increasing. Consequently, a detailed understanding is needed to illustrate the tensions and complexities surrounding end-of-life care, including the fact that hospice, despite its altruistic intentions and irreplaceable brand of care, is not immune to financial pressures being put on the whole health care system, nor is it immune to scrutiny regarding the eligibility of individuals accepted into hospice care. In addition to scrutiny and the closing of hospices in California and Delaware, a Colorado hospice has long been in the hot seat. St. Paul Hospice (SPH), one the nation’s oldest inpatient centers, opening in 1977, closed its 44bed inpatient unit in 2013. It didn’t take long for critics to start providing solutions to what went “terribly awry” in the last year. State health inspectors spent the better half of 2012 watching central operations and declared that the hospice owed at least $1.2 million to creditors and owed $90,000 to the pharmacy that supplied the pain medications needed by almost all the patients (Blasius, 2013). Not surprisingly, it had trouble making payroll. The president of SPH said, “We had the worst of all worlds. Costs are going up, reimbursements going down. Medicare asked for more documentation; there were reimbursement delays. And the loss of government funding caused a two percent reduction in payments to medical facilities.” Since the closure, SPH has been criticized for using hospice dollars to cover staff lunches and generating a somewhat “embarrassing” track record for fundraising. In local papers, the president of SPH reassures the families, staff and community that “I tried the best I could with what I had, given the circumstances.” I feel a strong connection to SPH. As an ethnographer, I volunteered there during 2008–2010. During my time, SPH
Health Communication 2015.30:732-736.
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was already facing enormous funding challenges, but never were the budget cuts reflected in the exceptional care that was provided. SPH was a special place. Its closing was devastating because hospice care programs and facilities across the world take care of our universal fears—pain, suffering, and loneliness. And they do so on razor-thin budget margins in ways not always seen, heard, or understood. I drove to SPH every Friday afternoon to wheel the hospitality cart, which is an office-like cart full of unhealthy snacks, soda, alcohol, and ice cream. I connected with patients. Families comforted me while I comforted them. I met new people and developed short- and long-term relationships with patients. Many hugged me, some yelled at me, several could not see me, others couldn’t hear me, and a few had lost their capacity to say anything to me. But all were taken in and cared for during their last months, days, and minutes by people who were, essentially, strangers. SPH, like many hospices, accepted patients no matter their financial situation, religion, or race. SPH was continuously rewarded for having the highest chaplain-to-patient ratios in the country to ensure that terminally ill patients would never have to die alone. I remember being asked on Friday afternoons to stay longer or come the next morning because a patient had been put “on watch” and that patient’s family was not around to be by his or her side. What follows is a series of personal reflections that outline some of the implications funding is having on care and care programs, especially for aging and dying individuals. I want you to get a feeling for what SPH was like in order to understand the potential losses associated with budget cuts. ENTERING SPH FOR THE FIRST TIME “Hi, I am coming for orientation and think I am lost,” I said. “Turn on Ellis Lane,” the woman at the front desk kept saying over the phone. “I am passing Safeway—did I go too far?” “Yes, turn around and take your second right. You will see a small street sign and below it says, no outlet.” Two tiredlooking apartment complexes with boarded windows, people smoking on the stoops, and balconies with signs advertising “reduced rent” lined both sides of Ellis Lane. I saw the chapel first; then two cream-colored buildings with low windows appeared on the left and right sides. A faded American flag waved gently above the parking lot. Bird feeders lined each patient window, some full of seed, some not. There was a smoking lounge by the main entrance that I passed walking in. As the glass door closed behind me and I took a breath, the smell of astringent (and every other nonnatural household cleaning product) burned the back of my throat. “Hello. Are you here for orientation?” “Hi. Yes, I am.” Standing up and walking to the hall with me, she said, “Head down this hallway and when it ends, take a right, cross
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the parking lot and when you come into the following wing, follow the patient hallway and there is a conference room all the way down on the left. If you get lost, ask the nurse’s station. And have a good time.” “Okay, thank you.” My new-hire orientation started at 8 a.m. and ended at 5 p.m., lunch included. We covered several topics and heard directors describe the history of SPH, hospice and palliative care philosophies and concepts, complementary therapies, infection control, safety, pastoral services, social services, cultural care, dietary-comfort kitchen, death and dying, bereavement, communication, and pain management. Slowly, I began to share a similar vision of hospice shared by many who walked the halls: There is something beautiful about the final days of life. A week later and high on SPH’s mission, I started my six hours of floor training pushing the hospitality cart. Two weeks after that, I started volunteering. I went in to every room where patients weren’t being bathed or sleeping, or were not “on watch.” I enjoyed this work a lot, and for the most part, patients enjoyed talking to me while wondering why someone so young would volunteer at hospice. After each shift, in recycled white three-ring binders, I documented what patients had to drink, what they had to eat, and anything interesting or unusual about their current mood. Documenting took me about an hour after pushing the cart. I was always alone in the volunteer room at this time on Friday evening and no matter how fast I tried to write, many of their “stories” on paper (i.e., poignant facts from volunteer patient files) slowed me down. Some that stood out in particular (note that this is not from one chart but a combination of them) were: Date of birth: Married: Address: Admitted from: Arrival: Diagnosis: Family:
1990 2009 none Emergency Department Taxi failure to thrive 3 kids, 6 grandkids
Sometimes there was a short bio describing a patient’s life, hobbies, previous professions, and anything else the family wanted SPH to know. Sometimes we knew nothing about a patient beyond age, name, and illness. After about eight months of pushing the hospitality cart, things at hospice began to feel and look a little different. I was overwhelmed, seeing and hearing patients’ unending pain, confusion, and loneliness. The nurses I interviewed and the training I went through reiterated the naturalness of death and in many cases the beauty of a “good and peaceful” death, but I could not see it as clearly. For the next year, I continued opening ginger-ale cans and bags of Doritos for patients, and attended most SPH activities—wreath decorating, llama visiting, pet therapy, holiday carolers, art activities—which provided a stable
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source of weekly interaction and conversation. I walked a fine line between opening the soda can, or bag of chips, and letting patients do it themselves, knowing their mobility skills were declining yet also aware that opening a can, a straw, or a bag of chips was one of the few things many patients could still control. Similarly, I endlessly felt pulled in wanting to spend hours with patients because of the relationship I had with many of them while knowing I wanted to get back to my own family. But I was only there one afternoon per week; the nurses were there on a daily basis, and patients could never leave.
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RESPONDING TO DEATH ON A DAILY BASIS Marty, who had short dark hair, deep brown wrinkles, and soft skin, grew up on the East Coast and had been living at hospice for more than six months, and was usually in her wheelchair folding napkins or knitting when I arrived early on Fridays. For that reason, I would usually prepare her drink first because she had the same request every week: half wine, half water, and a piece of chocolate as a chaser. I had arrived a little late (on time) so Marty was already in her room, lying down on the bed and smiling as we made eye contact. I walked in. “Hi, Marty.” “Do you have my wine?” “Yes, I do.” Her head and body curled liked a worm in excitement. “Oh, good. And some chocolate and nuts too?” “I forgot the nuts!” I walked back to the cart outside the door to take a small bag of nuts, running into Charleene, one of the nurses. “Is it OK for Marty to have nuts?” “Yes but she needs her teeth and I need to elevate the bed while she has her wine.” “Okay, great.” Marty usually drinks the wine in one sip and then follows with a piece of chocolate. We mix the wine with half water because, like anybody would, she used to get sick drinking a full glass of wine in one sip. Charleene and I walk back in together and Marty has her hand out to accept the wine. “Hold on, my dear, let me lift you up,” Charleene says, and Marty gives her a subtle stare-down. “Hey, just so you don’t choke, sweetie.” I am holding the nuts and chocolate as Marty says, “I need my teeth.” “Yes, you do. I will get them.” Charleene walks over to the restroom, turns on the sink and then walks back with a full set of teeth that are still wet after being rinsed. “Are they clean?” Marty asks. “Yes, they are, my dear,” as Charleene hands her the top set, and then the bottom set. “Do they feel okay?” Marty takes the wine and puts the chocolate and nuts next to her.
“You’ve been asking about the wine since 11 a.m., Miss Marty!” Marty gives us both a huge smile, nodding her head up and down. Charleene puts her hand on Marty’s shoulder giving her a quick rub and says, “I’ll be in again soon to clean you up for dinner, honey.” Marty nods. “Enjoy, Marty. I’ll stop by before I leave,” I say as I touch her leg and give her ankle a small squeeze. Marty died four months later. During her 12 months at SPH, she fell in love with Bill, who arrived around the same time she did and died a month before Marty. I have countless stories like this that illustrate the emotional fatigue of responding to death on a daily basis and the many ways staff adequately fulfill the diverse needs of patients and their family members in light of unique and limited resources.
FINAL WEEKS AT SPH I started in room 101, where Hannah ordered a Coke. John in room 102 had no request. I asked Arnie in 103 twice whether he wanted anything because he had changed his mind in the past. He said, “Get your ass over here to hear that I don’t want anything.” I would have probably said the same thing if I were sitting there in that same bed and someone healthy and happy walked through those doors offering me a soda or chips more than once. Leaving Arnie’s room I looked across the hall into 104 and saw Hank. He was an older man, balding, mouth frozen yet open slightly and a tracheostomy inserted in his throat with the machine working next to him. A nurse was filling water and I asked her if I should enter. She shook her head. “No, I am pretty sure they just put him ‘on watch.’” I waited as she walked to the nurses’ station, watching Hank breathe slowly by himself in the dark room. “Yes,” she said. “He just went on watch.” “Ugh, that’s sad,” I said softly, not thinking any one would hear. The nurse turned around and said, “Yeah, hopefully he’ll make it through Easter.” I looked back at her and said, “I hope he gets to go sooner; he doesn’t look very good.” “Yeah, I guess so,” she said. “I’m praying for the instant car accident, train wreck and so on kind of way out.” I nodded my head and said, “Yeah, me too.” Betty in room 105 had no request, and Gretel in 106 had her usual glass of Chardonnay. Tom from room 107 and Rick from 112 were in the smoking lounge and both wanted a Bud Light. Marvin in room 108 was also “on watch.” Jessie in room 109 had a devastating disease and was limited to a feeding tube. His wife was always there and took a few diet sodas and extra Fritos or Cheetos from the cart. She was missing several teeth and always told me how exhausted she was, working mornings and nights at her two jobs and then coming here in the afternoons to be with her husband.
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Rooms 113a and 113b were empty. Harri was in room 114. I knew she didn’t have very good eyesight per the nurse’s note and my encounter with her the previous week. She stared at one place no matter where I walked, so it was important I started speaking as soon as I knocked so she knew who was there. She was sitting on the edge of the bed watching “Ellen” on TV but didn’t want anything from the cart. The note on my chart said, “Harri is becoming confused about why she is at hospice and if she is dying. Please help her process by actively listening and using open-ended questions.” Across the hall in 115, Lucy’s door was closed but the nurse walked out and said one of the visitors would love a Diet 7Up. I handed her one and wheeled the cart toward room 116, where a nurse was communicating with Nora using paper and pen. I waited by the door and knocked quietly. The patient looked at me and then the nurse turned around and said, “Oh, no thank you.” I walked out and a visitor was walking in. “Do you care for anything?” I said. She looked at me, shook her head no and kept walking. Room 117 was empty, and so were beds 118a and 118b. Next side. Before I walked to the next side, I stopped at the main office to see whether there was any mail to take over. And there was, including a box of flowers for Lee in room 203. Lee’s door was closed when I got there and three adults, each with a notepad and pencil, were surrounding Lee’s bed. I peeked in and caught one woman’s eye; her head moved sideways to signal no. I scurried away, left the flowers with the nurse to deliver, and put the mail on the cart. I started in 201, Joan’s room: Joan, who almost always was sleeping with her mouth open and feet exposed in a pigeon-toe position. She had the most beautiful white hair and olive skin. I never saw her eyes open, or heard her speak. Room 202 was empty. The visitors in Lee’s room had left so I knocked, was waved in, and delivered the mail. She was cutting her flowers and I asked whether she or any of the new visitors cared for something to drink. “Want a gin and tonic, Lee?” “Sure, I guess,” she said. “But in a plastic cup”—pointing to the one on her night stand—“with a little gin and the rest tonic.” “Anything else?” I asked. “I’d love a glass of Cabernet,” one woman said. “Sure, I’ll be back soon.” I went back to the closet to get the gin, tonic, and plastic cup. I walked back and placed Lee’s drink on the table and handed the wine to the visitor and walked out. Charlotte was on the phone across the hall but not for long. She couldn’t get the phone on the receiver so I walked in and moved the blankets that were blocking her angle so she could put the phone down. “Hey, Charlotte. How are ya?” “Oh, so far so good,” she said, which was what she always said to me.
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“What’s new?” I said. “Nothing really, except I am so tired of people always wanting to clean me. The nurse was in here two hours ago and she just came in to say she needed to clean me again. And I told her, I am not dirty, I’m tired and I want to sleep! It’s like she has nothing else to do!” “Did you tell her you don’t want to be cleaned?” “Yes, several times but no one listens and you can’t do anything here; they are always cleaning me up.” “Maybe she just really likes you, Charlotte.” She laughed. “Yeah, maybe I need to start being mean to these people so they leave me alone.” “Well, how about a 7Up or ginger ale from the cart?” “Yeah, 7Up sounds real good.” I opened the can and poured it over ice while we talked about her son who told her he would visit every day for the last month. He hadn’t showed up since she arrived at hospice four months ago but had recently sent the last small box of her belongings from her house that had been sold. Inside the box were two things: a porcelain figure of Jesus Christ, and a Virgin Mary made of wood. She asked me to set them both on top of the TV and make sure they would never fall. Maria in room 205 was on watch. Jan in 206 was visiting with another volunteer so I kept walking. Jay in 207, who is diabetic, asked for pork skins. I told him I didn’t have any on the cart and he asked if I could please go to the market between now and next Friday so he could have some. I assured him that I would. He opted for Fritos and a Pepsi. Room 208 was empty. Mary, in room 209, was sleeping but I had mail for her so I left it on her table next to a frame that displayed several photos of her grandkids. Rooms 210, 212, 214, and 216 were also empty. And Keith, in 218, had just been put on watch and a volunteer was on the way in to be with him, since his family was not around. Room 220 was empty. For the first time Violet, in room 222, was awake. She also had mail, so I set it on her table and offered her a ginger ale since her daughter had told me that is her favorite. “Hi, Violet. I have some mail.” “Some milk, great; sit down.” I stayed standing. “How are you?” She laughed. “Let’s not have chicken tonight.” “Okay,” I said, “no chicken.” “Yeah, we’ve had it too much,” and she mumbled a few things after. “Are you coming to dinner?” she said. “Well, no, I can’t because I have to go home and eat there.” “Okay, sit down, have some milk, maybe some cream,” as she reached for the table. “Can I get you something?” I said. “Sit down,” she said. I walked closer and said, “Okay, but would you like some ginger ale?” “Some milk? Why don’t we have hot dogs for dinner and we’ll have,” and she mumbled some other things.
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“I can’t stay for hot dogs but your dinner will be here soon.” “Why can’t you stay?” “I am meeting my sister for dinner.” I didn’t know what to say but we’ve been trained at hospice to follow the conversation. And I never realized how much power “I need to go home” held until I said it, in this moment. “Yeah, your son, I mean grandson is dating someone so you better go.” I smiled and told her I’d see her soon. Her slipper had fallen off so I went to put it back on but she shook her head no so I took the other one off too and she smiled. I touched her foot to say goodbye and she looked startled and stared for a minute at where I had touched her sock. I said bye again; she looked up, said bye, and laughed. Sally in room 223 and Nancy in 225 were sleeping so I wheeled the cart back to its place and walked across the black asphalt parking lot to document each patient in the white binder back in the volunteers’ office. I left hospice at 4:45 p.m. that Friday night and drove down Ellis Lane with my windows down, yet another thing I took for granted. I turned on my tape recorder and talked into it during my drive home. The silence at hospice rattled my soul up and down. Patients’ bodies swollen, bandaged, wrinkled, white, bald, blind, deaf, cold, smelly, motionless, and crippled stayed with me after I left the facility. At hospice, I saw how illness and age literally take over bodies, skin, and minds every week. But it wasn’t death that I feared at hospice: I fear pain, losing control, and feeling lonely.
DEFINING MOMENTS IN HOSPICE CARE Caring organizations like hospice and palliative care programs manage the symptoms that aren’t always visible but are arguably the most important at any stage of life. The struggles to provide care with limited resources are not uncommon in health care, nor are the struggles around funding decisions. Consequently, hospice programs will continue to see the effects of budget cuts on people who can’t afford to be affected. My hope is that these reflections do several things. First, I hope they underscore the implications of funding on quality
of care and care programs, especially related to the elderly. In doing so, I hope they instill some courage for all of us to do better with some of the frailest humans of our population: the same population that many are scared to be around, for fear of catching something, or not knowing what to say. Second, I hope they remind us that we can take better care of care providers. Be curious about what they do, and why they do it. Ask questions and listen to them; be patient, connect with them, and even share a hug. Third, I hope they teach us the importance of spending time volunteering in these facilities. Have a conversation with family members about their hospice experiences. Volunteering is both a means for individuals to connect with social issues and a way of sustaining nonprofit organizations. And when you’re volunteering, there is actual evidence that volunteers are happier, have fewer depressions, like to talk about their work, and live longer than people who don’t volunteer (Gasiorek & Giles, 2013). Finally, I hope the therapeutic effect of listening to a patient’s suffering that led to the opening of the first teaching hospice will serve as a model for the way we respond to suffering and frailty. We can do better, on all levels. REFERENCES Abernethy, A. P., Bull, J., Whitten, E., Shelby, R., Wheeler, J. L., & Taylor, D. H. (2013). Targeted investment improves access to hospice and palliative care. Journal of Pain and Symptom Management, 46, 629–639. doi:10.1016/j.jpainsymman.2012.12.012 Blasius, M. (2013, November 7). Closed Hospice of Saint John criticized for spending, patient care. Retrieved from http://archive.9news. com/news/article/363398/222/Closed-hospice-criticized-for-spendingcare Gasiorek, J., & Giles, H. (2013). Communication, volunteering, and aging: A research agenda. International Journal of Communication, 7, 2659– 2677. Medicare payment policy: Report to Congress (MEDPAC). (2009). http:// www.medpac.gov Morrison, P., Cassel, C.-E., Litke, A., Spragens, L., & Meier, D. E. (2008). Cost savings associated with US hospital palliative care consultation programs. Archives of Internal Medicine, 168, 1783–1790. doi:10.1001/archinte.168.16.1783 Ragan, S. L., Wittenberg-Lyles, E. M., Goldsmith, J., & Sanchez-Reilly, S. (2008). Communication as comfort: Multiple voices in palliative care. New York, NY: Routledge. Saunders, C. (2003). A voice for the voiceless. In B. Monroe & D. Oliviere (Eds.), Patient participation in palliative care: A voice for the voiceless (pp. 3–8). Oxford, UK: Oxford University Press.
