End of Life and Palliative Care for Patients with HIV/AIDS

Students:

• Surendra Ramkissoon
• Rishi Gajadhar

Introduction:

During the 1980s, there was a rapid increase in the number of HIV/AIDS cases for which there was little treatment for both the individual and their family. However with the advent of antiretroviral therapy, there came a drastic change in the lifespan of these patients, delaying death and restoring the expectation of having an average life.

This was not without flaw as there became an added increase in the number of complications of therapy, including depression and mental distress, pain and isolation from friends and family. This paper seeks to introduce a curriculum to be used in schools of nursing nationally to educate nurses in training about palliative and end of life care for individuals with HIV/AIDS. It has been develop in line with the World Health Organization current standards of Palliative Care for Individuals with HIV and targeted towards meeting the needs of the client and family alike.

Southern Union State Nursing School:

End of Life and Palliative Care for Individuals with HIV/AIDS Curriculum:

Vision:

The Southern Union State Nursing School is a dynamic and diverse academic community of faculty and students where Undergraduate Nursing students work collaboratively to become full pledged nursing professionals for various levels of nursing practices. The Institution has pledged to provide excellent educational programs, innovative practical arrangements, and services to the community. We aspire to be the college of Excellence for professional nursing careers at the national and regional levels.

Mission:

Our mission is to provide an innovative, caring and multicultural environment in which faculty, students and staff work together to generate and transmit knowledge, wisdom and values to promote quality of life and health for present and future generations.To better reflect the unique diversity and heritage of Trinidad and Tobago, the SUSNS is committed to increasing the standard of health care where students practice in a pluralistic society, which is characterized by increasing social and cultural diversity. This requires that nurses respect cultural differences and recognize the right of choice regarding health care issues and end of life care.

Philosophy:

Each individual has personal rights and is deserving of respect with regards to his/her particular customs, beliefs, and needs at the end of life (Smith, 1998). The health consumer, who is served by nursing, has a right to actively participate and collaborate with health care providers in his/her plan of care (Taylor, 1998). The nurse is ever mindful of the consumer’s rights to be cared for and cared about, in order to effect a maximum level of wellness (Spence-Cagle, 2006).The SUSNS was founded on the belief that people are unique and possess the right to the preservation of their personal, ethnic, and cultural identities. Furthermore they have the right to access health care that is culturally congruent and respects their roles as partners in health promotion and disease prevention (Juckett, 2005). Human caring is seen as the essence of nursing, built on the premise that each person has intrinsic worth and value. Nursing care therefore focuses on preventative health education and research-based nursing interventions for individuals and communities (Liu, 2005). The SUSNS program is committed to fostering a dynamic curriculum that evolves in response to the changing demands of current and future health care needs in nursing, at the local, state, national, or international levels.

Core Values:

Our mission is supported by four core values:

1. Professionalism:

To uphold the highest ethical standards with accountability and transparency

2. Continuous improvement:

To be categorical in our pursuit for excellence and strive to re-invent ourselves to stay current and relevant

3. Empowerment:

To be ambassadors for our pursuit of excellence and be responsible for creating an enriching and inspiring experience (Gilbert, 2003)

Aim:

The aim of this course is to facilitate the attainment of knowledge to improve the quality of care delivered to individuals with HIV/AIDS at the end of their life. This competency would apply to practice in a variety of healthcare settings, patients across the wellness illness continuum, and patients across the lifespan, in collaboration with the interprofessional team (Singleton& Linton, 2007).

Rationale:

HIV/AIDS has affected every continent, and continues to infiltrate countries that once believed that they might be immune to its devastation. The virus presents an unmatched threat to human development and requires sustained action and long term commitment of all partners in healthcare. The rationale for proposing the integration of end of life and palliative care in Baccalaureate of Nursing Education is because nurses have been on the frontline in responding to this disease, providing hands on care to patients, supporting the development of patient-centered care and providing comfort to families on a daily basis (Institute of Medicine, 2003). Since cultural diversity is prevalent in the health care system of Trinidad and Tobago, it is vital for workers to attain effective training and education in end of life and palliative care to maintain a competent relationship with their patients. Furthermore, this curriculum includes the mandate to eliminate health disparities, so that nurses would be prepared to function in a global environment, and in partnership with other healthcare disciplines (Gillespie & Brown, 1996). This mandate would be met through the highest standards of training in the prevention, assessment and treatment of pain and other physical, psychosocial and spiritual problems associated with the HIV/AIDS virus.

Course Description:

Shortcomings in medical and nursing care at the end of life in Trinidad and Tobago and growing recognition of the unmet needs of patients and their families who confront serious life-threatening and terminal illnesses has fuel much speculation about end of life care. Although palliative care has been growing both locally and globally within recent years, there is still deficiencies in the process and unmet needs of many patients with HIV/AIDS. The purpose of this course is to provide a resource to strengthen the knowledge and competence of nursing students in delivering informed, compassionate and quality care to individuals with HIV/AIDS throughout the length of their illness and at the end of their life. This Program will also help students to develop an appreciation for their own cultural identities and become critically self-reflective in their orientation toward differences in the cultural identities of others as defined by race, ethnicity, gender, class, illness and sexual orientation (Ayonrinde, 2003).

Module 1: The Concept of End of Life and Palliative Care

Learning Outcomes:

By the end of this unit the students will be able to:

1. Define end of life care and palliative care.
2. Describe the management of patients approaching end of life.
3. Outline the public health approaches to palliative care.
4. Compare and Contrast palliative care and hospice care.
5. Outline the role of the palliative care nurse in the management of HIV&AIDS.
6. Discuss the history of palliative care in Trinidad and Tobago.

Module 2: Communication with Patient and Family.

Learning Outcomes:

By the end of this unit the students will be able to:

1. Discuss the concept of communication in relation to palliative and end of life care
2. Describe the Process of Breaking Bad News.
3. Demonstrate the ability to communicate effectively with patient and family in providing information.
4. Understand when to withdraw treatment options and communicate this to the family.
5. Determine the method and timing of breaking the bad news to family (Back & Curtis, 2002).

Module 3: Pain and Symptom Management.

Learning Outcomes:

By the end of this unit the students will be able to:

1. Assess the level of pain experienced by clients with HIV
2. Utilize knowledge by implementing management of clients experiencing pain with HIV
3. Understand the characteristics and treatment of nociceptive and neuropathic pain in HIV
4. Outline drawbacks related to pain management in HIV patients
5. Discuss underlying causes of dyspnea at the end of life
6. Explain what is involved in the assessment and treatment of dyspnea in HIV patients
7. Understand the nurses role in managing the patient with dyspnea in the last hours of life

Module 4: Psychosocial and Psychiatric Issues.

Learning Outcomes:

By the end of this unit the students will be able to:

1. Define Psychosocial Care.
2. Internalize what is involved in allowing the patients to have a good death.
3. Determine what is meant by maintaining worth and dignity of the patient.
4. Recognize the importance of family and spiritual leaders (also other societal support groups) in the patient’s life.
5. Explore appropriate nursing actions involved in caring for the terminally ill patient.

Module 5: Spirituality and Culture in Palliative Care:

Learning Outcomes:

By the end of this unit the students will be able to:

1. Describe spirituality.
2. Discuss the Task of Spiritual Care.
3. Discuss the fears of Death and Dying.
4. Explain effects of culture in Palliative care.
5. Discuss the interaction between trust and cross-cultural communication.

Case Study 1: Communication with Patient and Family.

Type of Activity: Role Play

Exercise: Breaking Bad News

Time: 20 minutes

Scenario: You are the nurse. Mary Jane has a clinic appointment today. She is a 30-year-old woman living with HIV for the past 5 years. She has been on various HAART regimens over that entire time with non-compliance has been an ongoing issue. Her viral load has now been increasing and T-Cell count trending low. On her last visit you did a resistance testing to see what might be going on. Based on the results, she might be out of options for HAART. Follow the bad news protocol to tell the Mary Jane this news.

Case Study 2: Spirituality and Culture in Palliative Care:

Type of Activity: Discussion

Time: 45-60 minutes

Purpose: To enable students to utilizing communication skills across the cultural continuum.

Scenario: As the nurse attending to an African-American man dying of AIDS, you and the medical team meet with his family to update them of his condition. The team has decided that further treatment is futile and has no positive outcome for his present condition. The patient’s parents and siblings insist that everything be done regardless, and become angry when you and the team say it would be futile. What do you need to know? What will you do and say in this situation? Course Policies:

Attendance Policy:

Punctuality and Regularity is an essential part of this course. Points will also be awarded based on active participation and contributions to class discussion during recitations and lectures. If you miss a class for any reason, it is your responsibility to find out the assignments, the material covered, and any other information that might have been provided during the missed class. There is absolutely no exception to this. An attendance of 75% minimum is mandatory for this course (SANE Student handbook 2010/2011)

Participation:

There are 2 case studies for discussion. An entire session will be devoted to this discussion. The instructor’s role is that of a moderator with the students identifying and discussing their views and thoughts about the case. There is no right or wrong answers in these exercises as we are more interested in meaningful contributions that either add to the debate or move it in a new direction. If you find it uncomfortable to speak up in class about an issue, we encourage visiting of the professor in office hours to aide in working on this skill of group discussion (CMU, 2013).

Expectation of the Students:

It is expected that all students will conduct themselves in a manner conducive to tertiary level learning. Please note that cellular phone use is extremely disruptive to the entire class and is therefore prohibited during class. If there is a personal emergency that requires you to be contacted during class, please make arrangements prior to class (CMU, 2013).

Teaching Methodology:

1. Case Study
2. Lecture / Discussion (45 to 60 minutes).
3. Power Point and Video Presentations.
4. Handouts on HIV/AIDS in Trinidad and Tobago.
5. Oral presentations on a Breaking Bad News to Patients and Family.
6. Role plays on Improving Interpersonal Relations.
7. Guided fieldtrip to Medical Research Facility of Trinidad and Tobago.

Assessment / Evaluation Methods:

1. Quiz
2. Individual Assignment
3. Mid Term Exam
4. Group Problem Based Learning Assignment
5. Final Exam

Required Reading:

1. A Clinical Guide to Supportive and Palliative Care for HIV/AIDS in Sub-Saharan Africa

http://hab.hrsa.gov

Reference Texts:

1. Palliative Nursing: Across the Spectrum of Care Edited by Elaine Stevens, Susan Jackson, Stuart Milligan
2. Palliative Care Nursing: Quality Care to the End of Life, Third Edition. Edited by Marianne LaPorte Matzo, Deborah Witt Sherman

Summary:

According to WHO (2007), HIV/AIDS presents with unique end of life issues and challenges. Generally, the younger more marginalized or members of minority groups have been affected. Although major developments have been made in fighting this disease in terms of medication and treatment, there is still a long way to go as it pertains to end of life and palliative care. It is necessary to remember that as life is extended, symptoms of pain, depression and spirituality will plague the individual from the time of diagnosis until death.

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This curriculum provides an in depth look at the major issues surrounding HIV/AIDS and palliative/end of life care as it affects the global community. All health care providers must strive to ensure that access to this kind of comprehensive care without fear and prejudice is made available to all living with this disease. Therefore this curriculum has been tailored to be introduced into schools of nursing to educate training nurses on the importance of allowing a person a comfortable end of life and death with dignity.

Grading Scale

References:

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Back, A. (1998). The Process of Breaking Bad News. University of Washington Department of Medicine Ethics in Medicine Retrieved http://eduserv.hscer.washington.edu/bioethics/topics/badnws.html

Back, A. & Curtis, J.R. (2002). Communicating bad news. Western Journal of Medicine 176: 1-5.

Carnigie-Mellon University. (2013). The Syllabus: Course Policies / Expectations. Retrieved http://www.cmu.edu/teaching/designteach/design/syllabus/samples-policiesexpectations/

Fox, R. (2001). Palliative care in the age of HIV/AIDS: The research perspective. J R Soc Med 94(9): 428.

Gilbert, J. (2003). Principles and recommended standards for cultural competence education of health care professionals. Retrieved http://www.calendow.org/uploadedfiles/principles_standards_cultural_competence.pdf

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Selwyn, P. (2001). Palliative care needs of medically-underserved persons with HIV/AIDS in an urban inner city. Retrieved: apha.confex.com/apha/129am/techprogram/paper_31243.htm.

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Sserunkuma, R., Otolok-Tanga, E. & Kasule, K. (1998). Living with and dying of AIDS: Today’s changes. International Conference on HIV/AIDS 1998, Retrieved http://depts.washington.edu/pallcare/training/curriculum_pdfs/OverviewModule.pdf

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World Health Organisation. (2007). Towards universal access: scaling up priority HIV/AIDS interventions in the health sector. Retrieved http://www.who.int/hiv/mediacentre/universal_access_progress_report_en.pdf.