TWO CULTURES OF CARING: A COMPARATIVE TWO CULTURES OF CARING: A COMPARATIVE STUDYSTUDY““I open up the door and the cigarette smoke just slaps you in the face. There is no ventilation. I open up the door and the cigarette smoke just slaps you in the face. There is no ventilation.

TheyThey’’re depressed, theyre depressed, they’’re still actively drinking…you walk into that and you have to accept it, re still actively drinking…you walk into that and you have to accept it, you just have to meet people where they are…you just have to meet people where they are…””

IntroductionIntroductionOver 60 percent of the 2.5 million people dying in the US every year Over 60 percent of the 2.5 million people dying in the US every year will receive some level of end-of-life care as they progress toward the will receive some level of end-of-life care as they progress toward the final stages of their illness trajectory. Hospice is often considered the final stages of their illness trajectory. Hospice is often considered the ““gold standardgold standard”” of optimal end-of-life care (Hill, 2005). of optimal end-of-life care (Hill, 2005).

Background & SignificanceBackground & SignificanceThe United Kingdom was recently cited world number one leader in The United Kingdom was recently cited world number one leader in providing end-of-life care; the United States ranked 9providing end-of-life care; the United States ranked 9 thth (Economist (Economist Intelligence Unit, 2010). Higginson (2005) suggests that Intelligence Unit, 2010). Higginson (2005) suggests that ““There is There is much that the UK and the US could and should learn from each other much that the UK and the US could and should learn from each other to understand the quality of end-of-life care, through comparison of to understand the quality of end-of-life care, through comparison of practice, analysis of care patterns and via original research.practice, analysis of care patterns and via original research.”” Although Although comparisons between end-of-life care in the United Kingdom and comparisons between end-of-life care in the United Kingdom and United States have demonstrated similarities and disparities in many United States have demonstrated similarities and disparities in many contexts, there is little evidence of research that directly compares contexts, there is little evidence of research that directly compares nursing perspectives between the two Atlantic partners.nursing perspectives between the two Atlantic partners.

PurposePurposeTo explore nurses’ perceptions and experiences of caring for people To explore nurses’ perceptions and experiences of caring for people within a hospice context between the United Kingdom and the United within a hospice context between the United Kingdom and the United States.States.

Literature ReviewLiterature ReviewThere is an abundance of comparative research globally regarding There is an abundance of comparative research globally regarding general end-of-life care, and several research articles that directly general end-of-life care, and several research articles that directly compare the United Kingdom with the United States in the hospice compare the United Kingdom with the United States in the hospice field. However, a comprehensive literature review did not reveal any field. However, a comprehensive literature review did not reveal any research focusing directly on nursing perspectives in hospice care research focusing directly on nursing perspectives in hospice care between the two countries.between the two countries.

MethodologyMethodologyA descriptive qualitative research design was used to accommodate a A descriptive qualitative research design was used to accommodate a comprehensive summary and presentation of nursecomprehensive summary and presentation of nurse’’s perceptions and s perceptions and experiences as they relate to hospice care. A small purposive sampling experiences as they relate to hospice care. A small purposive sampling of 18 nurses working in a hospice environment formed the non-of 18 nurses working in a hospice environment formed the non-probability sample population. Semi-structured interviews using open-probability sample population. Semi-structured interviews using open-ended questions were digitally recorded and 98,461 words were ended questions were digitally recorded and 98,461 words were transcribed verbatim.transcribed verbatim.

Data AnalysisData AnalysisData categorizing and coding allowed the researchers to cluster similar Data categorizing and coding allowed the researchers to cluster similar data responses by classification of themes for indexing purposes. Over data responses by classification of themes for indexing purposes. Over 20 themes and 80 categories were reduced down to 3 main themes 20 themes and 80 categories were reduced down to 3 main themes with 4-5 key categories in each. The objective of the analytical process with 4-5 key categories in each. The objective of the analytical process was to use the emerging data themes to accurately account and was to use the emerging data themes to accurately account and summarize nursessummarize nurses’’ perceptions of hospice care by highlighting key perceptions of hospice care by highlighting key concepts, experiences, and perceptions of significance, which may concepts, experiences, and perceptions of significance, which may warrant future Transatlantic comparative research.warrant future Transatlantic comparative research.

ReflectionReflectionThe similarities and differences found between the Atlantic partners The similarities and differences found between the Atlantic partners reflected significant cultural differences in support networks and work reflected significant cultural differences in support networks and work ethos. The UK valued colleague support from a professional and ethos. The UK valued colleague support from a professional and personal coping perspective, but did not feel that it was forthcoming, personal coping perspective, but did not feel that it was forthcoming, resulting in them feeling lonely and overwhelmed in their roles. resulting in them feeling lonely and overwhelmed in their roles. Conversely, the US team felt well supported, perhaps as they are Conversely, the US team felt well supported, perhaps as they are required to work more independently and autonomously, and as a required to work more independently and autonomously, and as a result, feel better equipped in coping with the role of hospice nurse.result, feel better equipped in coping with the role of hospice nurse.

ConclusionConclusionFurther transatlantic research may be warranted into areas such as Further transatlantic research may be warranted into areas such as euthanasia discussion, autonomous and independent nursing versus euthanasia discussion, autonomous and independent nursing versus collaborative care, patient-centered-care versus system-managed care, collaborative care, patient-centered-care versus system-managed care, misconceptions about referral timing and appropriateness, and the role misconceptions about referral timing and appropriateness, and the role of support and clinical supervision in hospice nursing.of support and clinical supervision in hospice nursing.

AcknowledgementsAcknowledgementsResearch By University of New Hampshire Senior Nursing StudentsResearch By University of New Hampshire Senior Nursing StudentsLisa Armstrong & Christina PolitoLisa Armstrong & Christina PolitoDr. Gerard Tobin, PhD, RN, RMN, Honors Thesis SponsorDr. Gerard Tobin, PhD, RN, RMN, Honors Thesis SponsorDr. Carol Williams-Barnard, PhD, RN, Honors-in-Major CoordinatorDr. Carol Williams-Barnard, PhD, RN, Honors-in-Major CoordinatorDr. Georgeann Murphy, PhD, Coordinator, International ResearchDr. Georgeann Murphy, PhD, Coordinator, International ResearchResearch Funding from the Hamel CenterResearch Funding from the Hamel CenterNursing Staff from St. PeterNursing Staff from St. Peter’’s Hospice in Bristol, UK and froms Hospice in Bristol, UK and fromHome Healthcare Hospice & Services, Keene, NH and CommunityHome Healthcare Hospice & Services, Keene, NH and CommunityHealth & Hospice in Laconia, NHHealth & Hospice in Laconia, NH

References:References:Centers for Disease Control and Prevention (2003). Deaths and Mortality. Retrieved February 24, 2011 from http://www.cdc.gov/nchs/fastats/deaths.htmHigginson, I. J. (2005). End-of-Life Care: Lessons from Other Nations. Journal of Palliative Medicine, 8s-161-s-173. Doi:10.1089/jpm.2005.8.s-161Hill, J. (2005). Hospice utilization: political, cultural, and legal issues. Journal of Nursing Law, 10(4), 216-224Hill, J. (2005). Hospice utilization: political, cultural, and legal issues. Journal of Nursing Law, 10(4), 216-224The Economist Intelligence Unit (2010). The quality of death: ranking end-of-life care across the world. Retrieved from http://www.eiu.com/site_info.asp?info_name=qualityofdeath_lienfoundation&rf=0

NurseNurseas aas a

Care-GiverCare-Giver

NurseNurseas an as an

IndividualIndividual

NurseNurseas a as a

ProfessionalProfessional

Shared Shared Perceptions & Perceptions & ExperiencesExperiences

US nurses use physical activity physical activity to cope to cope with the stress of the role, such as walking the dog, going to the gym, and yoga

Utilize the support of work work colleagues and colleagues and organization organization counselors counselors more than family and friends in copingin coping

Feel that their own awareness of awareness of self spirituality self spirituality has grown in their role as a hospice nurse

Sets boundaries Sets boundaries with self and client/families

Feel that the hospice nurse is autonomous and autonomous and independentindependent

US care is focused on achieving fast , effective, andcost efficient cost efficient symptom controlsymptom control

Educate the client and the family to be independent be independent and self-and self-sufficient sufficient at home during the end-of-life process. Autonomous care is the focus of US hospice nurses

Consider the issue of appropriate medical medical insurance a insurance a barrier barrier to hospice services

Consider being able to work to work alone and alone and independently independently an important skill in community hospice nursing

NurseNurseas aas a

Care-GiverCare-Giver

NurseNurseas an as an

IndividualIndividual

NurseNurseas a as a

ProfessionalProfessional

UK nurses use compartmentalizing skills to cope skills to cope with the stress of the role, such as ““shutting offshutting off”” or or ““off-loadingoff-loading””

Utilize the support of support of family and family and friendsfriends more than work colleagues as a coping a coping strategystrategy

Feel that they are more aware of their own religious beliefs religious beliefs as a hospice nurse

Identifies with Identifies with the client the client and often wonders how the family are coping

Feel that the role of a home hospice nurse can be lonely and lonely and overwhelmingoverwhelming

Relationship Centered Care and “Back to Basics” authentic authentic care care is the goal of UK nurses

Provide for 24 hr Provide for 24 hr nursing care nursing care in the client home during end of life process. Collaborative care is the focus of UK hospice services

Feel that cultural cultural stereotyping in stereotyping in ethnic diversities ethnic diversities is a barrier is a barrier to hospice services

Feel that support support from the hospice from the hospice interdisciplinary interdisciplinary team team is vital in carrying out effective care in the community

Consider previous general / general / oncology nurse a oncology nurse a prerequisite prerequisite for hospice nursing

Regularly need to educate client and families that Euthanasia is not Euthanasia is not part of the part of the hospice hospice philosophyphilosophy

Have to correct misconceptions about timing of end-of-life care, as many patients are referred too referred too early or early or inappropriately inappropriately and are often discharged from hospice services

Communication Communication is often strained is often strained and time-limited and time-limited with colleagues and management

Nurse as a ProfessionalNurse as a ProfessionalPublic Knowledge and Education

Both teams share the opinion that hospice services still need increased exposure need increased exposure at a community level

CommunicationBoth teams agree that excellent communication skillsexcellent communication skills

are paramount in home hospice care, both internally within the organization and externally with patient and

families

““There is a lot of joy when youThere is a lot of joy when you’’re just re just sitting with a person and holding their sitting with a person and holding their hand, or youhand, or you’’re with somebody when they re with somebody when they take their last breath, and you know you take their last breath, and you know you have been a part of the family and a part have been a part of the family and a part of the patientof the patient’’s life and yous life and you’’ve made a ve made a difference…itdifference…it’’s monumental, its monumental, it’’s huge, s huge, but itbut it’’s as simple as that.”s as simple as that.”

Feel it is not not important to important to have experience have experience in general/ oncology nursing prior to hospice nursing

Rarely have Rarely have discussions discussions with clients and families about about Euthanasia Euthanasia

Have to correct misconceptions about timing of end-of-life care, as many patients are referred too referred too late late from physicians to receive effective symptom relief and future management

Feel supported supported by management by management and peersand peers, and also benefit from clinical supervision

Nurse as an IndividualNurse as an IndividualLiving in the Moment

US and UK nurses equally discussed their aptitude for “living in the moment” or “being in the here and nobeing in the here and noww” as a result of being surrounded by death on a daily

basis

Using Colleagues, Friends, & Family to CopeBoth teams talked of their own personal support personal support

networks networks and the important role they play in helping them to undertake “the work of hospice”

Nurse as a Care-GiverNurse as a Care-GiverSymptom Control & Privilege

Symptom control was the #1 reward for all hospice nurses. Many nurses talked of the privilege and privilege and

honor honor of being present in the final hours of a persons life

Dealing with Anger and GriefInadequate symptom control Inadequate symptom control was also the #1 distressing factor in hospice nursing, alongside

managing client/family transference of anger and grief