This presentation is focused on Mr Brown, a 72-year-old adult male patient who was admitted in an East of England hospital. He was diagnosed with mandibular tumour which is a type of oral cancer. Pseudonyms have been used and settings changed to maintain patient confidentiality in line with Nursing and Midwifery Council (NMC, 2018). The author seeks to discuss Mr Brown’s long-term health condition and critically analyse the progression and the effect of this condition and aging on his social life. Evidence based interventions for people with long term conditions (LTC) including pharmacological and non-pharmacological interventions will also be evaluated. An analysis will be made on the conflict between ethical, professional and legal principles and the role of the nurse within health promotion for patients with long term health conditions.

Mr Brown was first admitted in hospital a year ago due to tonsillectomy, resection of tumour on his left mandible and mild chronic renal failure. He was readmitted into hospital to remove his left side plate. Before his latest hospital admission, he lived alone in his two-bedroom flat and he was single. He was a retired warehouse worker and drank occasionally but never smoked cigarettes. He lived an active life, taking part in community activities and going on holidays abroad. His closest relatives were his older sister and her daughter who lived in another town. They arranged for him to be taken into a care home for the elderly once he was discharged from hospital.

Mr Brown’s left side plate was successfully removed through surgery but the wound on his cheek did not heal properly. He was referred to specialists for rehabilitation and was also fitted with a percutaneous endoscopic gastrostomy (PEG) feeding tube for nutritional support. Hashida (2017) and Ijichi and Murakami (2017) noted that after surgery, mandibular tumour patients suffer from complications including “osteoradionecrosis, infection of the soft tissue flap, bone exposure, gingival necrosis, plate exposure, abscesses, and fistulas”. They also reported that cancer patients normally suffer from weight loss and dysphagia, a complication arising from inability to swallow.

Carrier (2015) and Hökkä, Kaakinen and Pölkki (2014) explain that cancer is a long-term condition which affects individuals differently, from frequent visits to the GP/hospital, taking increased quantities of medication, money problems and social isolation. Hinz et al. (2019) added that LTC brings a permanent change to a patient’s life as the disease and its implications are constantly changing. This therefore calls for on-going and complex treatments. LTC affects the patient physically, socially and psychologically. Mr Brown must bear with associated problems such as depression and other aspects of life including social isolation, family relationships, and challenges in carrying out activities of daily living (Hinz et al. 2019).

Christenbery (2017) quoted Sackett et al. (1996)’s definition of evidence-based practice (EBP) as the “conscientious, explicit, and judicious use of the integration of current best evidence, clinical expertise, and patient values into the decision-making process for patient care” That is combining the nurse’s clinical expertise with best available externally researched clinical evidence. The purpose of EBP these days is to safeguard patient safety by providing quality healthcare that is based on comprehensive evidence whilst considering the individual patient’s needs and preferences (Christenbery, 2017). Schmidt and Brown (2017) concur by explaining the role of a nurse as that of using their critical thinking skills to asses research publications and other sources of information and apply their clinical expertise in caring for patients with LTC whilst respecting the patient’s needs and preferences

Taverner (2015) state that cancer patients suffer from a mixed-mechanism of pain, including neuropathic pain as a result of chemotherapy, radiotherapy, surgery, and musculoskeletal pain due to inactivity.

Attal et al. (2006

) describe neuropathic pain as chronic pain which is a result of a damaged or dysfunctional nerve. The patient usually obtains incorrect signals that are perceived as pain in addition to tingling sensation, pins and needles and numbness. This greatly affects the patient’s quality of life and requires both pharmacological and non-pharmacological interventions. Taverner (2015) further state that patients respond differently to explicit neuropathic pain drugs. This calls for nurses to recognise neuropathic pain, its appearance and appreciate the need for wide-ranging and ongoing patient assessment and management. It also means that Mr Brown may have to try several drugs before suitable ones are found which work for him. NICE (2019) also state that some cancer patients do not respond to conventional pain analgesic and may need to try several pain management strategies, including pharmacological and non-pharmacological interventions. Treatment plans should be developed in partnership with Mr Brown who should also be made aware of any complications or side-effect of the chosen intervention strategies (NICE, 2019)

Pharmacological interventions for pain reduction include use of drugs such as anticonvulsants, antidepressants and Opioids. Non-pharmacological interventions include rehabilitative treatment, transcutaneous electrical stimulation, and psychological therapy (Davies and D’Arcy, 2013; Taverner, 2015; and Wilkinson and Whiteman, 2017). British Pain Society (2013), NICE (2013) and WHO (1990) recommend a multi-modal approach using either a combination of both pharmacological and non-pharmacological interventions or one of these depending upon the patient’s preference and response to ongoing treatment.

All decisions made for Mr Brown’s treatment and care should be in his best interest, considering ethical and legal principles and informed consent (Mental Capacity Act 2005; Human Right Act 1998; Equality Act 2010; Allmark and Tod, 2009). Mr Brown had capacity and nurses should give him autonomy and freedom to make decisions about his care and those decisions should be respected. Nurses have a legal duty of care not to harm patients due to negligence, Nurses also have a duty to observe the NHS Constitution (DH, 2013), and applying the 6Cs of nursing (NHS, no date) in caring for Mr Brown.

REFERENCE LIST

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• Attal N, Cruccu G, Haanpää M et al (2006) EFNS Task Force. Guidelines on pharmacological treatment of neuropathic pain. Eur J Neurol 13(11): 1153–69
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• Carrier, J. (2015) Managing long-term conditions and chronic illness in primary care. Routledge Ltd.
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  Evidence-based practice in nursing: foundations, skills, and roles,
  
  1st edn, Springer Publishing Company, New York.
• Davies, P. S. and D’Arcy, Y. M. (2013)
  
  Compact Clinical Guide to Cancer Pain Management: An Evidence-Based Approach for Nurses
  
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  Nutrition,
  
  
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• Hökkä, M., Kaakinen, P. & Pölkki, T. (2014), “A systematic review: non‐pharmacological interventions in treating pain in patients with advanced cancer”,
  
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  Evidence-Based Practice for Nurses: Appraisal and Application of Research,
  
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  vol. 21, no. 8, pp. 380-384.
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In the domain of psychiatry and specifically in the area of mental health nursing, it is essential that an early, quality assessment with accurate information is gathered about the patient. Psychotic, neurotic and depressed behaviours are all different. Sullivan (1990) makes it clear that poor assessment and/or misinterpretation of a patient’s presentation can be critical to their well-being and subsequent treatment or therapies. Bearing this in mind, it becomes vital that the mental health nurse is adept at conducting effective assessments.

This account considers such exemplars through witnessing a one to one interview in an acute unit, will analyse and reflect on those skills employed to assess the bio-psycho-social needs of the patient and include references to clarify evidence-based practise. In keeping with the Code of Confidentiality as is required by (An Bord Altranais (ABA) 2000), relating to client confidentiality, names and locations involved have been changed. Thus, the client will be called Mary.

The Gibbs cycle (1988), is used as a reflection tool to create a structured account of the discussion, and clearly show that true reflection in practise has occurred during its research. Mary is a 38-year-old married female depressive and more recently has had a secondary diagnosis of Anorexia. She has been a frequent patient over ten years to the acute ward where I was on placement. Mary was assigned a nurse whom I shadowed during this time to make my observations who was very helpful and pointed out pertinent features of mental health care practice to me. Mary refuses to eat and drinks only when her body demands it. When unfamiliar people are near, she gives distressed cries. She is on high protein fluids and is weighed every few days. I was shown how to observe her eating pattern and left to perform my task. I was embarrassed and horrified that she wouldn’t eat for me and as she wouldn’t talk I had no idea whether she liked what was offered to her. I felt out of my depth and didn’t know what to do. She would scream and shout out at me and I’m not sure whether this was her way of trying to communicate with me. I felt I should be doing more for her but not sure what. I informed my preceptor that she would not eat what was offered and was told not to worry he would try again, she turned her head. I felt totally useless as I could see this lady was fading away from lack of food but as she refused to eat there wasn’t much I could do and as she would not talk I didn’t know how to communicate with her.

Deliberate self-harm may refer to any act of non-accidental, self-inflicted injury.  It covers a broad spectrum of behaviour from successful suicides to non-fatal overdoses or self-inflicted wounding, which may have been previously classed as attempted suicide McAlaney ( 2004). Whilst Mary’s medical condition was not assessed as being immediately life-threatening her psychological presentation gave the nurse no other alternative than to contact the on call senior psychiatric house officer to conduct an assessment (bio/soc/psy evaluation) of her mental state. It must contain a detailed and precise record of what happened and any answers given to often very structured forms of psychological questioning. Thompson and Mathias (2000) likewise describe the process as acquiring information about a person or situation that may include a description of the person’s wants and ambitions. Although I was not allowed to sit in with this interview I was fortunate to be present when Mary’s assigned nurse was talking to Mary on a one to one basis. Before entering the room where the assessment was to take place, I obtained the required consent from Mary (A.B.A. 2000) to be present.

Control of the environment and assuring privacy can be central to successful assessment. Despite not being specifically designed for the assessment of distressed patients the nurse quickly checked for comfort, that chairs were the same height, distanced suitably from each other to avoid invasion of personal space yet allowing easy discussion.

The nurse remained at the same level as his patient at all times and practised positive body language; leaning slightly forward in his chair, maintaining an open posture and remaining relaxed throughout. These characteristics have been well documented by Farley (1992). He further ensured that Mary had sufficient water and nutrition prior to the assessment- as far as she was willing that day considering her condition. The important thing was to have Mary at ease. Thompson and Mathias (2000) suggest that careful attention should be given to these points.  He then asked Mary how she would prefer to be addressed. Holland and Hogg (2001) reported that professionals must not assume that everyone wishes to be known by their listed name.  This clarification promotes affability as well as professionalism.

Brief periods of general chat opened the session to set an ambient atmosphere for the interview. This introductory phase is also referred to as the orientation or pre-helping phase. Forchuk (2002), states that Health professionals with well-honed listening skills, empathy and who display understanding allow patients to express their concerns, discuss options and build trust.

The nurse interviewing Mary didn’t rush the interview, let silence prevail for her to consider her answers and further supported Mary with encouraging statements to draw information such as, “Tell me a little more what makes you feel this way…” Martin (1995), concludes silences actually maximise interaction with a patient. At this stage of the process Mary tentatively began disclosing some information to the nurse and it could be noticed that a therapeutic relationship was beginning to formulate. Actually engaging in conversation whether disclosure or otherwise was a big step for Mary.  The works of Burnard (1999) further promoted this observation.

Mary seemed to be doing most of the talking while the nurse responded with active listening. Listening with attention and commitment is a caring response and forms the basis of all effective communication. Eye contact and continuation sounds, body language and gesture all gave safe non-verbal messages and encouraged continued conversation.  Brereton (1995) has identified that listening skills dominate talking skills; in the context of a psychiatric assessment this showed that a client’s condition gives added value if the doctor is able to give time to the patient to express herself rather than give her (the doctor) interpretation of what she may have been trying to say.

Mary was now helping herself and seemed a little relieved to be sharing her thoughts at this time.  Mary’s mood was important to the assessment. The nurse identified her presentation as familiar with that of depression and her diagnosis was supported by her confirmation of not wanting to eat or drink and feeling uncomfortable around people. She became distressed and was unable to maintain eye contact. These symptoms are classic of the depressed patient Barker (1997).

To support this diagnosis, both open and closed questions were necessary. A closed question directly requires a yes or no response but does not necessarily invite any elaboration. Barker (1997) suggests that closed questions are appropriate in the initial stages of the assessment to establish simple facts and clarification as they put fewer demands on the patient. In this assessment the nurse had managed to establish rapport quite quickly and asked more open questions (using how/why) like “I am interested that you say you don’t want to eat any more, can you tell me a little more why you feel like this?” as opposed to, “Are you eating well?” but Mary began to withdraw. This cue told the experienced nurse to hold back and it began to identify the content of her thoughts and he noted the responses discreetly whilst attempting to retain eye contact with her as much as possible.

The process of maintaining eye contact was further used to examine her ability to reciprocate. Nelson-Jones, (2002) mentions that the inability of patients to maintain prolonged eye contact would indicate he/she may be in a withdrawn state or feel uncomfortable in his/her condition. Barker (1997) further stated that over enthusiasm about eye contact might cause an aggressive or confrontational experience. The use of this method was appropriate as the assessment progressed. The nurse summarised in terms that Mary could understand, and identified key points discussed, gaining Mary’s affirmation that her interpretation was valid. Nelson-Jones (2002) said this process gives the patient a clear feeling of acknowledgement from another of their deepest feelings while aiding the recovery process.

The skills used in Mental Health assessments emphasise the need for a holistic approach in the work of the Mental Health Nurse. There is no standard format or panacea in the profession of Mental Health Nursing; the many tools and strategies used throughout the process depend fundamentally on the skill of treating each person as an individual, with their own set of needs and concerns as paramount. The assessment witnessed demonstrated that combining these skills promotes a good rapport with the patient and most importantly getting a full picture that can be interpreted and shared with the multi disciplinary team for the onward process of the care pathway approach.

I have discovered that being objectively caring and non-judgmental in assessing the current situation at presentation is a key attribute in assessment skill. Often when interviewing known clients it can be difficult to avoid simply replicating their previous diagnosis or being frightened by the available evidence. I have further reflected on the necessity to question a patient using inter personal skills and effective non-verbal stimuli to encourage exploration and expression of their feelings, sometimes when they are particularly vulnerable, in order to help them. Academic research and observed practise-based experience can help the development of these skills. I have further learnt that people in crisis need continual support and assistance through their acute phase. This will make me more aware of my communication skills.

Designed to make sure the patient is comfortable and pain-free End of Life Palliative Care enables the patient to function through the end stages of a terminal illness. The process includes medication, alternate treatments such as chemotherapy and radiation therapies. Palliative Care is not only for pain control but also to assist the patient in dealing with the other treatments that come with the dreaded terminal disease.

Palliative care as seen today is fairly new, although hospice care has been around since the 19th Century. The goal is to allow the patient to die in an environment that will be comfortable, familiar and with loved ones.

“Patients and families often don’t think about it until it’s too late for them to benefit from it; that’s the problem, ” says Diane Mayer, MD, and director of the center for Advance Palliative Care (CAPC) in NYC.

“You matter because you are you. You matter to the last moment of your life and we will do all we can not only to help you die peacefully but to live until you die”

(Hospice Care Philosophy)

End of Life Palliative Care

End of Life: a term to describe medical care for patients with terminal illnesses or conditions that have become advanced, progressive and incurable.

Palliative Care: is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay, or reverse progression of the disease itself or provide a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness (Wikipedia).

To understand End of Life Palliative Care you must first understand that this is an approach to improve the quality of life of not only the patient but also the families. It not only is to alleviate the pain but also the symptoms associated with treatments

Although a relatively new field in medicine, palliative care has a very long history in several forms. Beginning with the 4th century hospice was originally a place of rest for travelers and, then progressed into a hospice for the dying in the 19th century by a religious order.

In the last decade palliative care has become standard practice in hospitals across the country. The standard seemed to be medicated-heavily. Palliative care is aggressive symptom management, a decision-making platform for the end-of-life care. With comfort being the purpose a patient should be allowed the option. One could put it in the terms “How comfortable is the patient? Is the family able to deal with the daily stresses of either a family member who is a zombie or are they able to see the patient suffering and in pain?

Hospice and palliative represent two different aspects with a very similar philosophy. Palliative care services are provided in either an acute care hospital under the care of an interdisciplinary consultation service that consists of a team of highly trained physicians and nurses or in the comfort of the patient’s home surrounded by family.

When a patient sees a traditional physician or specialist the main concern of that doctor is to find a cure whether by surgery, medication or by clinical trials (the process of trying to find a cure for a traditionally incurable disease by using a careful predetermined mixture of different medications and monitoring the progression of disease. This process is monitored by the IRB – Internal Review Board and NIH – National Institutes of Health). When patient’s symptoms become unmanageable most physicians prescribe something to alleviate or mask the pain but this process can be dangerous if not carefully monitored. Addiction and other side effects can be hazardous. According to ______ a patient who enrolls in a hospice program is basically agreeing to forgo aggressive treatment to cure and start a treatment to preserve their comfort.

Palliative care can help a patient deal with the physical and emotional distress. Total suffering, a concept first thought up by Cicely Saunders, and now widely used. Dealing with total suffering involves a broad range of concerns, starting with treating physical symptoms such as pain, nausea and breathlessness. The treating teams are highly skilled in dosing medications to control patient’s symptoms but still be able to function. The team not only consists of physicians and nurses but also social workers, counselors and a clergy member(s).

Hospice care has grown exponentially in the United States. It went from mainly a volunteer organization to a major part of our healthcare systems. Amazingly, the focus on patient centered care and the quality of life has increased during the past twenty years. In the United States today, 55% of hospitals with more than 100 beds offer a palliative care program, and nearly one-fifth of community hospitals have palliative care programs. A relatively recent development is the concept of a dedicated health care team that is entirely geared toward palliative treatment: a palliative care team. Most specialty (oncology) facilities have a entire department dedicated to the end of life care.

In 2008 it is estimated that more than 1.45 million patients received hospice care and is the only Medicare benefit that includes pharmaceuticals, and medical equipment. A patient under hospice care will receive twenty-four/seven care if needed. The care extends to the family for up to one year following a death.

In the U.S. palliative care services can be offered to any patient without restriction to disease or prognosis. Hospice care under the Medicare Hospice Benefit, however, requires that two physicians certify that a patient has less than six months to live if the disease follows its usual course. This does not mean, though, that if a patient is still living after six months in hospice he or she will be discharged from the service.

When patients is diagnosed with a terminal disease, advanced or end stage cancer that person and the family goes through many emotions or stages. The palliative care team can help with any or all of the stages such as the shock or denial where the patient thinks something can be done or that there is a cure, or the “I’m dreaming”, “this can’t be happening to me”, denial.

The end of life is unique to each person and the goal of a caregiver is to make the final days and hours of a patient’s life as comfortable as possible.

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.

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

Assignment	Percentage of Final Grade
2 Case Study Discussions	10 %
1 Individual Assignment	5%
1 Midterm	10%
1 Group PBL	10%
Attendance and Participation	5%
Final Exam	60%
TOTAL	100%

90-100%	A	4 credits
80-89.9%	B	3 credits
70-79.9%	C	2 credits
60-69.9%	D	1 credit
≤59.9%	F	0 credits

References:

Ayonrinde, O. (2003). Importance of cultural sensitivity in therapeutic transactions: Considerations for healthcare providers. Disability Management and Health Outcomes, 11(4), 234-246

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

Grady, P., Knebel, A. & Draper, A. (2001). End-of-life issues in HIV/AIDS: The research perspective. J R Soc Med 94(9): 479-82. PubMed Abstract.

Greenberg, B., McCorkle, R., Vlahov, D. & Selwyn, P. (2000). Palliative care for HIV in the era of HAART. J Urb Hlth 77(2): 150-65. PubMed Abstract.

Grothe, T. & Brody, R. (1995). Palliative care for HIV/AIDS. J Pall Care 11(2): 48-9. PubMed Abstract.

Gillespie, J. & Brown, K.M. (1996). Promoting cultural competence in the baccalaureate nursing student.South Carolina Nurse, 3(4): 22.

Health Resources Services Administration HIV/AIDS Bureau. (2000). Palliative and supportive care. HRSA Care Action 2000(July): 1-4. F

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

Institute of Medicine, (2003).

Unequal Treatment. What healthcare providers need to

know about racial and ethnic disparities in healthcare.

National Academy Press.

Washington, D.C.

Juckett, G. (2005). Cross-cultural medicine.

Journal of


American Family Physician

, Vol. 72(11), 2267-2275.

Liu, G. Z. (2005). Best Practices: Developing Cross-cultural Competence from a Chinese Perspective. In J.H. Stone (Ed.),

Culture and disability: providing culturally competent services

(pp.187-201). Thousand Oaks, CA: Sage Publications.

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.

Selwyn, P., & Arnold, R. (1998). From fate to tragedy: The changing meanings of life, death, and AIDS. Annals of Internal Medicine 129(11): 899-902.

Singleton, G., & Linton, C. (2007). Facilitator’s Guide for A Field Guide for Achieving

Equity in Schools: Courageous Conversations about Race Corwin Press.

Spence-Cagle, C. (2006). Student understanding of culturally and ethically responsive care: Implications for nursing curricula. Nursing Education Perspectives, 27(6): 308-314.

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

Stajduhar, K. & Davies, B. (1998). Palliative care at home: Reflections on HIV/AIDS family caregiving experiences. J Pall Care 14(2): 14-22.

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.