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The University of Toledo
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The utilization patterns of occupational and physical therapy in hospice Mary Allison Hillard The University of Toledo
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Running head: PATTERNS OF THERAPY IN HOSPICE
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The Utilization Patterns of Occupational and Physical Therapy in Hospice
Mary Allison Hillard Research Advisor: Barbara Kopp Miller, Ph.D. Occupational Therapy Doctorate Program Department of Rehabilitation Sciences The University of Toledo May 2012
This scholarly project reflects individualized, original research conducted in partial fulfillment of the requirements for the Occupational Therapy Doctorate Program, The University of Toledo.
PATTERNS OF THERAPY IN HOSPICE
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The present study reviewed patients’ medical charts within a 16 month time frame from a local hospice with the focus on the utilization rate and reasoning of referral to occupational and physical therapy in hospice. There were 3,041 patients at Hospice of Northwest Ohio, Inc. from May 1, 2010 to August 31, 2011. Of these participants, 1,587 fit the criteria of at least 18 years old and a length stay over 14 days. Thirty eight of these participants received occupation and/or physical therapy making the utilization rate .023 percent. Excluding two participants due to their age being older than 90 years, the overall mean age of the 36 participants was 71.28 years (SD = 13.24; range = 54). Of those participants, 58 percent were female and 42 percent were male. The mean age of females was 73.57 (SD = 14.56; range = 54) and the mean age of males was 68.07 (SD = 10.79; range = 35). Out of these 38 participants, 3 received occupational therapy making the utilization rate for occupational therapy services .001 percent. Thirty seven participants received physical therapy making the utilization rate for physical therapy services .023 percent. The reason for occupational therapy referral was arm brace support, functional improvement, autonomy, and hand braces and contractures. The number one reason for physical therapy referral was strengthening. After reviewing the reasons for referral and the number of participants receiving occupational therapy and physical therapy in hospice, there is support that occupational therapy and physical therapy are underutilized. Occupational therapy has the capability to improve a patient’s quality of life during the dying process. More advocacy for occupational and physical therapy in hospice needs to occur.
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The Utilization Patterns of Occupational and Physical Therapy in Hospice Hospice care is a supportive service for individuals and their families during the final stages of life. Hospice uses interdisciplinary teams and volunteers to work closely with the needs of individuals that are terminally ill and their families. Interdisciplinary teams at hospice include, but are not limited to, occupational and physical therapy. Researchers have found that therapies in hospice are prospering (Frost, 2001). Past research has explored the role of occupational therapy in hospice (Rahman, 2000) and occupational therapists knowledge and attitudes of working with patients in palliative care (Pitzen, 2009). In addition, past research has explored how physical therapists can effectively assess and treat patients in hospice (Mackey & Sparling, 2000). Together, occupational and physical therapists work to improve patients’ roles of self-care, mobility, and leisure. The present study reviews the utilization patterns of occupational and physical therapy in hospice. To better understand the present study, hospice and palliative care will be defined. Included will be the roles of occupational and physical therapy in hospice. A description of the present study follows. Hospice and palliative care Studies have shown that both hospice and palliative care provide vital roles in supporting the patient and their family during the final stages of life. According to the National Hospice and Palliative Care Organization (2010) “hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well.” During this final stage of life, hospice provides support in making patients feel comfortable and content with their quality of life. The majority of patients want to continue to feel active and not lose their dignity during these last few months (Frost, 2001). Hospice care provides the patients the dignity they so desire. Patients that have
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the opportunity to restore their dignity through self-care and leisure occupations feel a sense of satisfaction in their lives (Rahman, 2000, p. 807). Hospice and palliative care are similar but contribute different roles in patient care which are often misunderstood. Bye and colleagues (2009) suggested “the term ‘hospice’ refers to the philosophy of care that is a foundation for a palliative approach” (p. 640). However, it is common for palliative care to be called upon at any stage of the seriously ill patient’s life. Hospice care, in general, is called upon during the final stage of one’s life. Palliative care, unlike hospice, is referred to as a medical care that helps the patient with specific symptoms especially symptoms of pain. Palliative care does not focus on finding a cure for the patient. Similar to hospice, palliative care assists with both the patient and family member’s quality of life. If the patient is receiving palliative care during the final stage of life, palliative care collaborates with hospice. Both palliative and hospice care work with the terminally ill to allow them to feel whole and give them a sense of dignity before the end of their life. Many types of therapies are utilized in hospice and palliative care. One type of therapy seen in hospice is occupational therapy. An occupational therapist plays a different role in working with patients in hospice compared to other therapies. It is to this topic that will be discussed next. The role of occupational therapy in hospice The goal of the occupational therapist is to improve a patient’s quality of life through meaningful and purposeful occupations. Occupational therapists have many roles as outlined in the Guidelines for Supervision, Roles, and Responsibilities During the Delivery of Occupational Therapy Services (AOTA, 2009). Example of roles described in this document include knowing the patients needs, being knowledgeable on outside community opportunities, improving the
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patients’ quality of life, and assisting in the regaining of the patients’ sense of self. Occupational therapists are responsible for evaluating, goal setting, intervention planning, and the safety of the patient. The occupational therapist focuses on helping the patient with everyday occupations of daily living (e.g., dressing) and instrumental occupations of daily living (e.g., managing finances). Occupational therapists often use a client-centered approach and help individuals cope with their diseases and/or disabilities. In addition, they work closely with the patient’s family and caregivers. Frost (2001) suggested that “therapy is elemental to the hospice intent of enhancing dignity and comfort and enlisting family involvement in the home” (p. 401). Occupational therapists play a vital role in hospice by adapting occupations that can help improve the patient’s quality of life. In hospice, occupational therapists work closely on self-care, transfers, and home management to enhance the patient’s well-being. Furthermore, occupational therapists assist patients in dressing, bathing, toileting, transferring, preparing food, managing money, safety awareness, fall prevention, and managing household chores (Frost, 2001). In addition, occupational therapists work on providing coping skills as well as giving the patient a sense of self. In hospice, occupational therapists work on improving posture and positioning to help the patient decrease pain and fatigue during daily occupations. They also provide assistive devices to help control the environment of the patient. Studies have shown that through occupational therapy patients feeling in control and having a sense of self improves their well-being (Rahman, 2000). Occupational therapists also aid patients and families by giving the patient closure to his or her life before the dying process. Occupational therapists help improve the patient’s feeling of dignity, sense of self, independence, and peace with the dying process. Involving the families
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helps provide the patient with a feeling of calmness, satisfaction, and purpose during the dying process. As stated in Bye et al. (2009) “Occupational therapists can significantly influence quality of life by enhancing participation by the older client or their caregivers in daily occupations that work toward the achievement of a good death (AOTA, 2005).” During the final stage of life, it is important to talk openly about the end-of-life process to help patients accept death. Occupational therapists can help with the final stage by not only talking with patients but helping them find closure with any last wishes they have or any “unfinished” business they may express. According to Pizzi and Briggs (2004) “Occupational and physical therapists help to shape that transition [of death with dignity and replete with meaning] and create optimal living environments for people facing end of life” (p. 129). Occupational and physical therapists often co-treat in settings that they work in together. Physical therapy, as well as occupational therapy, is also having a growing presence in hospice (Frost, 2001). The role of physical therapy in hospice Like occupational therapy, physical therapy has many different roles in hospice. According to Frost (2001) physical therapists work with the patient on reducing pain, weakness, and other difficulties that can be affected during movement. The physical therapist treats the patient by the use of therapeutic exercise and physical agent modalities to help improve one’s quality of life. Physical therapists collaborate with hospice staff in assisting the patient with positioning in bed, rolling in bed, transferring from sit to stand and stand to sit, walking strategies, using good body mechanics, keeping the lower extremity from weakening, and working on range of motion (Frost, 2001). Physical therapists assist with these movements to help improve the patient’s well-being and self-gratification. Physical therapists, like
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occupational therapist, help in other ways to make the patient feel a sense of self, dignity, and independence during the dying process. Mackey and Sparling (2000) stated “in hospice care, physical therapists assist patients in maintaining their self-identity, waiting “actively” for death, achieving a comfort level, and confidently using their remaining abilities as the gradual reduction in functional abilities, roles, and expectations occurs” (p. 460). From the literature, it is clear that occupational and physical therapy have a role in hospice. Additional research has investigated the effectiveness of therapies in hospice and this topic will now be reviewed. Past research on therapies in hospice Past research has focused on ways to guide physical therapists to effectively assess and treat older patients with cancer who are in hospice (Mackey & Sparling, 2000). Through a qualitative single-case study, interview data was gathered to gain knowledge about providing physical therapy to patients who were terminally ill. Three older women, diagnosed with cancer and receiving hospice care, participated in the study. Through interviews, the physical therapy researchers found that common themes of importance for the women were social relationships, spirituality, outlook on mortality, and meaningful physical activity. Based on the data, the researchers concluded that physical therapists in hospice care can provide more than the physical needs commonly associated with physical therapy, but also the social and cognitive needs that were expressed as being important to the patients. Rahman (2000) studied the role of occupational therapy in hospice. In addition, she was interested in determining the level of divergence therapists might feel in supporting both living and dying patients. The qualitative analysis consisted of an interview with four occupational therapists who worked in hospice. Open-ended questions were asked to the occupational therapists, such as “how do you see the role of OT in hospice?” (Rahman, 2000). The results of
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the study found that occupational therapists played a significant role and addressed physical, social, emotional, and spiritual care. Some of these roles included the need for occupational therapists to address lost roles with the patient, help the patient cope with the dying process, and provide comfort care to the patients. Pitzen (2009) researched the knowledge and attitudes of occupational therapists on palliative care and hospice. Pitzen (2009) sent out 1000 surveys to certified occupational therapists that worked in the state of Ohio. Demographic information, a palliative care knowledge test, and an attitude toward palliative care scale were solicited. The return rate was 34 percent with 320 usable surveys out of 330 returned. Ninety eight percent of participants believed that there was a role for occupational therapy in palliative care. For the palliative care knowledge test, the overall mean was 10.46 out of 12 indicating a high knowledge of palliative care. The top three items participants correctly stated were that palliative care patients have different needs, can enjoy life, and hospice is not just for people who have only a few days to live. However, only 46 percent correctly responded that hospice care does not include home care and nursing home care. Thirty three percent of participants incorrectly thought that patients that choose hospice had accepted the dying process and 30 percent of participants stated that they did not understand palliative care as a type of medicine for individuals with a terminal illness. For the attitudes toward palliative care section, 17 questions were asked using a five point Likert Scale. These questions had an overall mean score of 62.39 out of 85 concluding that there was a positive attitude towards palliative care. Eighty one percent of participants strongly agreed that individuals receiving palliative care should get the same treatment as any other patient and 85 percent agreed or strongly agreed they would be at ease touching a patient receiving palliative care. However, conflicting with the prior results, 71 percent of the participants admitted that
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they would feel uncomfortable around patients receiving palliative care. Eighty percent agreed they could not imagine caring for a patient receiving palliative care. Pitzen (2009) reported that the top roles for occupational therapy in palliative care included positioning, home modification, and caregiver education. After asking the participants to identify the barriers for occupational therapists to increase their role in palliative care, participants agreed it was occupational therapists lack of awareness for the need of occupational therapy in the palliative setting. Pitzen concluded that occupational therapy is not being utilized in palliative care due to the lack of awareness for the need of occupational therapy. The past studies by Mackey and Sparling (2000), Rahman (2000), and Pitzen (2009) have shown that there is a role for occupational and physical therapy in hospice. This leads to the present study of determining the utilization patterns of occupational and physical therapy in hospice. Present study The literature supports the use of occupational and physical therapies in hospice and that they are appropriate and should be utilized. To this end, the purpose of this study was to determine the utilization patterns of occupational and physical therapy in hospice. There is currently no research that has documented utilization patterns of occupational and physical therapy in hospice. The importance of this study is to understand if there is a pattern in which hospice patients receive occupational and physical therapy. This is important because if we are not utilizing occupational and/or physical therapy are we denying a patient the services to improve their quality of life. This descriptive chart review study addresses the following research questions: 1. What is the utilization rate and reasoning for referral to occupational therapy in hospice?
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2. What is the utilization rate and reasoning for referral to physical therapy in hospice? Method Participation Organization Hospice of Northwest Ohio, a community leader in hospice services, has grown over the past 30 years to currently be the largest provider of hospice care in the Toledo area. This agency provides assistance to patients in nursing homes, patients in their own home, and in Hospice Centers. Currently they care for over 2,800 individuals a year with the help of 460 staff members and 400 volunteers. Their mission is stated as follows “Hospice of Northwest Ohio provides specialized medical, emotional and spiritual care to people of all ages--and their families--living with any end-stage illness in Northwest Ohio and Southeast Michigan” (Hospice of Northwest Ohio, 2011). Medical charts were reviewed from May 1, 2010 to August 31, 2011 through Hospice of Northwest Ohio, Inc. The exclusion criteria in this study was that individuals were 18 years or older and had a length of stay over 14 days. Measures/ Procedures Chart data was compiled and converted into a spreadsheet by a staff member at Hospice of Northwest Ohio. All identifying information was removed prior to the researchers receiving the spreadsheet. The following data was gathered for all patients who received occupational and physical therapy during the noted time: •
Age, gender, and diagnosis; if over 90 years old, age was not provided due to HIPPA regulations;
•
Reasoning for referral to occupational therapy and number of visits in therapy; and
•
Reasoning for referral to physical therapy and number of visits in therapy.
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There were 3,041 patients at Hospice of Northwest Ohio, Inc. from May 1, 2010 to August 31, 2011. One thousand five hundred and eighty-seven of those participants fit the criteria of being over 18 years old and having a length of stay over 14 days. Thirty-eight of those participants received occupational and/or physical therapy making the utilization rate .023 percent. Excluding two participants age due to the HIPPA regulations of their age being older than 90 years old, the overall mean age of the 36 participants was 71.28 years (SD = 13.24; range = 54). Of those 36 participants, 58 percent were female and 42 percent were male. The mean age of females was 73.57 (SD = 14.56; range = 54) and the mean age of males was 68.07 (SD = 10.79; range = 35). The top three diagnoses were cancer followed by obstructive chronic bronchitis, and congestive heart failure. Of the 38 participants that received occupational and/or physical therapy, three received occupational therapy and 37 received physical therapy. The utilization rate for occupational therapy was .001 percent. One participant that was referred to occupational therapy needed an arm brace and functional improvement. This individual had a diagnosis of alcohol cirrhosis of the liver and was seen for one visit. Another individual was referred to improve autonomy. This individual had a diagnosis of cerebrovascular disease and saw the occupational therapist for five visits. The third participant was referred to assist with hand braces and contractures. This individual had the diagnosis of Huntington’s Chorea and saw the occupational therapist for four visits. There was one participant with the diagnosis amyotrophic sclerosis who received occupational therapy from an outside service for splint adjustment for one visit. This participant was not included in the utilization rate since it was an outside service. See Table 1 for more detail regarding occupational therapy referrals and number of visits.
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The utilization rate for physical therapy was .023 percent. The top referrals for physical therapy were strengthening, optimal and restoration of mobility, and gait training through steadiness and strengthening. See Table 2 for more detail regarding physical therapy referrals and number of visits. Discussion The purpose of the present study was to determine the utilization patterns of occupational and physical therapy in hospice. Review of the medical charts provides support that occupational and physical therapy are being underutilized in hospice. This is a surprising result as past research supports the use of occupational therapy in hospice. For example, Rahman (2000) reported in her study that occupational therapists play a significant role in hospice in assisting patients with lost roles, coping with the dying process, and providing care to the patients. Furthermore, Pitzen (2009) reported that 98 percent of occupational therapists survey reported that there is a need for occupational therapy in palliative care and hospice. Occupational therapy can be referred to hospice for more reasons than what was found in the current study. As stated in the literature review, occupational therapists’ role in hospice also can be used for improving and/or assisting a patient with self-care, transfer, and home management. Occupational therapists’ main goal is to improve a patient’s quality of life through meaningful and purposeful occupations. As Frost (2001) discussed, an occupational therapist can assist a patient in everyday skills such as dressing, bathing, toileting, transferring, managing money, safety awareness, fall prevention, and managing household chores. Thus, occupational therapy can assist a patient in many daily occupations to improve that individual’s quality of life (Bye et al., 2009).
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Past research also supports the use of physical therapy in hospice. Mackey and Sparling (2000) reported that physical therapists play an important role in hospice through addressing physical, social, and cognitive needs. Physical therapists help the patient in reducing pain, weakness, and other causes that can be affected during daily movement (Frost 2001). Physical therapists’ help to improve a patient’s quality of life through therapeutic exercise such as walking, increasing strength, and good positioning techniques. Physical therapists assist the patients in these therapeutic exercises to allow patients to keep a sense of their identity and to allow the best comfort level as possible during the dying process (Mackey and Sparling, 2000). Implication Occupational and physical therapy are an essential part in helping to create the best living environment for individuals during the end of life process (Pizzi & Briggs, 2004). However, the current research provided that only .001 percent received occupational therapy and .023 percent received physical therapy at a local hospice facility over a 16 month time frame. This may suggest the lack of advocacy efforts on behalf of occupational and physical therapists to the public and healthcare professionals about their roles in hospice. Further educational courses and/or fieldwork opportunities to occupational and physical therapy students will help educate the students on the roles and need for these therapies in hospice. Through continuing educational workshops, occupational and physical therapists will become more knowledgeable on their roles and need in hospice. Occupational and physical therapists can also educate hospice staff through educational in-services on the roles the therapies can provide to hospice. Through these educational efforts it will allow the students, occupational and physical therapists, and the hospice staff to become more knowledgeable on the roles of occupational and physical therapy in hospice. This knowledge will help these
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individuals realize the need of occupational and physical therapy in hospice and hopefully utilize these therapies more in hospice. Limitations and Future Research Limitations in the current study should be considered. The first limitation is the lack of documentation of outside therapy services of patients whose charts were reviewed at hospice. This lack of documentation is a limitation due to the possibility that more participants may have utilized occupational and physical therapy than was documented in the medical charts. Future research should attempt to gather data from all services received to get an accurate utilization pattern of services. The second limitation is the 16 month time frame that medical charts were gathered and reviewed. The 16 month time frame was used because of the constraint of the electronic nature of past medical records. Future research should attempt to gather and review medical charts in a longer time frame to compare the utilization patterns over a longer period of time. Future research should explore the reasons occupational and physical therapies are referred at a low utilization rate. Understanding the reasons for the low referral rate can determine what steps to take to increase a higher utilization rate of occupational and physical therapy in hospice. Conclusion Occupational and physical therapists are an important part of the interdisciplinary team utilized by hospice. Occupational and physical therapists can improve a patient’s quality of life through self-care, mobility, and leisure during the end of life process. However, occupational and physical therapists are being underutilized in hospice and not used to their full capabilities. Occupational and physical therapists need to advocate for their roles in hospice to the public and
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healthcare professionals. Future research should explore the reasons for the low utilization rates of occupational and physical therapy.
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American Occupational Therapy Association (2009). Guidelines for supervision, roles, and responsibilities during the delivery of occupational therapy services. American Journal of Occupational Therapy, 63(6), 797-803. Bye, R.A., Llewellyn, G. M., & Christi, K.E. (2009). The end of life. In B.R. Bonder, & V. D. Bello-Haas, (Eds.), Functional Performance in Older Adults (3rd ed.) (pp. 633-655) Philadelphia, PA: F.A. Davis Casarett, D.J., Hirschman, K.B., & Henry, M.R. (2001). Does hospice have a role in nursing home care at the end of life? American Geriatrics Society, 49(11), 1493-1498. Frost, M. (2001). The role of physical, occupational, and speech therapy in hospice: Patient empowerment. American Journal of Hospice and Palliative Care, 18(6), 397-402. Hess, D.R. (2004). Retrospective studies and chart reviews. Respiratory Care, 49(10), 11711174. Hospice of Northwest Ohio (2011). Celebrating 30 years. Retrieved from http://www.hospicenwo.org/index.php?src=gendocs&ref=30%20Years&category=30Year s Hospice of Northwest Ohio (2011). About us. Retrieved from http://www.hospicenwo.org/index.php?submenu=about&src=gendocs&ref=AboutUs&cat egory=Main Kirk, T.W., & Mahon, M.M. (2010). National hospice and palliative care organization (NHPCO) position statement and commentary on the use of palliative sedation in imminently dying terminally ill patients. Journal of Pain and Symptom Management, 39(5), 914-923.
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Mackey, K.M., & Sparling, J.W. (2000). Experiences of older women with cancer receiving hospice care: Significance for physical therapy. Physical Therapy, 80(5), 459-468. National Hospice and Palliative Care Organization (NHPCO) (2010). The NHPCO facts and figures: Hospice care in America. Retrieved from http://www.nhpco.org/files/public/Statistics_Research/Hospice_Facts_Figures_Oct2010.pdf Pitzen, K. M. (2009). Occupational therapy and palliative care: A survey of attitudes and knowledge (Scholarly project). Department of Occupational Therapy, University of Toledo, Toledo, Ohio. Pizzi, M.A., & Briggs, R. (2004). Occupational and physical therapy in hospice: The facilitation of meaning, quality of life, and well-being. Topics in Geriatric Rehabilitation, 20(2), 120-130. Prochnau, G., Lui, L., & Boman, J. (2003). Personal-professional connections in palliative care occupational therapy. American Journal of Occupational Therapy, 57(2), 196-204. Rahman, H. (2000). Journey of providing care in hospice: Perspectives of occupational therapists. Qualitative Health Research, 10(6), 806-818. Trump, S.M., Zahoransky, M., & Siebert, C. (2005). Occupational therapy and hospice. American Journal of Occupational Therapy, 59(6), 671-675.
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Table 1 The Data and Utilization Patterns of Occupational Therapy Age Gender
Referral-OT
OT-visits
Alcohol Cirrhosis of the Liver 61
M
Arm brace support/ functional improvement
1
Amyotrophic Sclerosis 68
M
Splint adjustment-out
1-out
Cerebrovascular Disease 83
F
Improve autonomy
5
Huntington’s Chorea 62
M
Assist with hand braces/ contractures
Note. OT = occupational therapy; out = outside occupational therapy services.
4
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Table 2 The Data and Utilization Patterns of Physical Therapy Age Gender
Referral-PT
PT-visits
Alcohol Cirrhosis of the Liver 59
M
Optimal mobility/ strengthening
13
Acute Kidney Failure 79
F
Transfers/ strengthening
15
Amyotrophic Sclerosis 68
M
Maintain skills/ strengthening
1 3-out
Breast Cancer 55
F
Gait strengthening
5
Colon Cancer 79
F
Optimal mobility
2
74
F
Gait strengthening
5
85
F
Strengthening
6
(Continued)
PATTERNS OF THERAPY IN HOSPICE
Age Gender
20
Referral-PT
PT-visits
Chronic Airway Obstruction 68
F
Strengthening/ increase activity
4
Congestive Heart Failure 54
M
Strengthening
10
89
M
Strengthening/ if able to discharge to assistive living
4
85
F
Strengthening/ train caregiver
3
88
F
Strengthening/ discharge planning
16
Cerebrovascular Disease 83
F
Strengthening
10
80
F
Evaluation of cerebrovascular disease with left side weakness
6
Dementia 85
M
Pivot transfers/ safety
3
Heart Disease 84
M
Strengthening/ ambulation
4
85
F
Strengthening/ stretching/ range of motion
8
-
M
Strengthening
3
(Continued)
PATTERNS OF THERAPY IN HOSPICE
Age Gender
21
Referral-PT
PT-visits Huntington’s Chorea
62
M
Safety/ equipment needs/ transferring safely
4
Leukemia 89
F
Ability to discharge home
1
Lung Cancer -
M
Optimal mobility/ gait strengthening
2
62
M
Strengthening/ restore mobility
2
Lymphoma 55
M
Strengthening/ gait steadiness
13
77
F
Strengthening
4
Malignant Neoplasm 35
F
Strengthening/ stretching/ range of motion/ psychological assessment
3
83
F
Strengthening/ mobility
2
67
M
Optimal functioning mobility
9
(Continued)
PATTERNS OF THERAPY IN HOSPICE
Age Gender
Referral-PT
22
PT-visits
Obstructive Chronic Bronchitis 73
F
Strengthening/ ambulation
2
57
F
Treatment of chronic obstructive pulmonary disease
1
69
F
Strengthening
5
68
M
Safety
2
71
F
Gait training/ mobility
4
62
M
Strengthening/ improve quality of life
4
Ovarian Cancer 85
F
Strengthening
5 Pancreas Cancer
72
M
Strengthening
2 Peritoneal Cancer
45
F
Strengthening
5 Prostate Cancer
73
M
Strengthening
Note. PT = physical therapy; out = outside physical therapy services.
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