Dr. Aida Abd El-Razek *Associate Professor of Maternal and Newborn Health Nursing Faculty of Nursing,

ILOs At the end of this lecture the student’s will be able to Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Understand Quality of life  Explain Powell’s Model of Quality of life Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Classify Principles Quality of Life Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Applying Conceptual framework of Quality of life Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Definition of Quality of life  Principles of Quality of life.  Critique of Health-Related Q.L Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Principles of Q. L  Palliative care and treatment of pain to improve Q. L  Clinical Vignettes in Quality of Life Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Definitions of Quality of Life Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Quality of life is the degree of need and satisfaction within the physical, psychological, social, activity, material and structural area.  Quality of life is the subjective evaluation of good and satisfactory character of life as a whole. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Quality of life is a state of well-being which is a composite of two components: 1) the ability to perform everyday activities which reflects physical psychological, and social well- being and 2) patient satisfaction with levels of functioning and the control of disease and/or treatment related symptoms Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 The most fundamental goal of Nursing care is the improvement of quality of life for all those who need and seek care, and also relief of pain and improvement of function. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 All activities, such as nursing care, examining, evaluating, diagnosing, treating, curing, comforting and educating, aim at improving the patient’s quality of life. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 It expresses a value judgment: the experience of living, as a whole or in some aspect, is judged to be “good” or “bad”, “better” or “worse”. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 In recent years, efforts have been made to develop measures of quality of life that can be used to evaluate outcomes of clinical interventions. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Such measures list a variety of physical functions, such as mobility, performance of activities of daily living, absence or presence of pain, social interaction, and mental acuity. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 In general, quality of life can be defined as a multidimensional construct that includes “performance and enjoyment of social roles, physical health, intellectual functioning, emotional state, and life satisfaction or well- being.” Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Quality-of –life judgments must consider personal and social function and performance, symptoms, prognosis, and the individual, often unique values that patients ascribe to the quality of their life. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Who is making the evaluation—the person living the life or an observer?  What criteria are being used for evaluation?  What types of clinical decisions are justified by reference to quality-of- life judgment? Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Recently, Nursing & Medical skills have been used to improve on normal conditions ： cosmetic surgery responds to the desires of individuals for a more beautiful appearance, administration of growth hormone increases height for persons of short stature…… Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Treatment attempt to respond to physical, physiologic, or psychological defects that deprive persons of normal characteristics.  Enhancement are made in response to patient preference and to improve quality of life. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 QOL is, “the degree to which the person enjoys the important possibilities of his or her life" (Renwick & Brown, 1996).  Humanistic-existential model  Humans have needs ◦ Physical, psychological, and spiritual ◦ Affiliation and self-actualization  3 Elements of their Model ◦ Being, belonging, and becoming. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

Powell’s Model Quality of Life Objective Behavioral Competence leisure and discretionary activities Environmental Quality structure and process of care Subjective Perceived QOL time, friends, family Psychological Well Being satisfaction, affect

1. QOL is multidimensional 2. QOL is bio-psycho-social 3. QOL appraisal must be holistic 4. QOL components are common to all people and the human condition, i.e. not different for people with disability 5. Disability doesn’t imply increased or decreased QOL 6. QOL meaning is individual Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Being is comprised of physical, psychological and spiritual dimensions;  Spiritual  Belonging is comprised of social, community, and ecological dimensions  Community  Becoming is constituted by personal growth, leisure, and practical.  Growth Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

Quality of Life Personal Values Physical Personal safety Health Fitness Mobility Development & Activity Competence independence, choice & control Productivity job, education home life, leisure Material Finance Housing Transport Security & tenure Social Relationships family, friends Community Emotional Well Being Mental health Self-esteem Faith Sexuality Fulfillment

 Palliative care is defined as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Relief of pain is a traditional nursing goal.  Increasingly, palliative care nursing deals with pain and suffering at the end of life.  Palliative care nursing uses methods to achieve global aims: aiding patients to deal with their impending death and its effect on others. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Palliative care includes skilled application of pain-relieving drugs.  Competence in palliative care includes not only science and skill in managing pain but also understand and application of ethical principles. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Patient should not be kept on a drug regimen inadequate to control pain because of the ignorance of the physician Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Attempt to achieve adequate pain relief have another side effect, namely, the clouding of the patient’s consciousness and the hindering of the patient’s communication with family and friends.  This consequence may be distressing to patient and family and ethically troubling to physicians and nurses. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Instead, sensitive attention to patient’s needs, together with skilled medical management, should lead as close as possible to the desired objective: maximum relief of pain with minimal diminution of consciousness and communication. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Appropriate control of pain and symptoms;  Avoid inappropriate prolongation of dying; Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Enhance the control of patients over their care;  Rest with family;  Supported by physicians, nurses, and social workers. Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 When should we ask? ◦ Which patients should we ask?  Response shift ◦ Is a low quality of life a sign of  a low physical functioning?  an absence of the response shift? Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 Keeps on coming back to the clinic  Modifies social environment  Passive in own goals  Angry, depressed, suspicious  Low quality of life Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

 A low quality of life sign of low adaptation  Increase adoption will increase quality of life  A starting point for psychological therapy ◦ A low quality of life ◦ Malfunctioning of adaptation ◦ Wrong coping strategy  Behavioral / peer group therapy ◦ Personality disorder  More invasive therapy Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

Faculty (Collective & Individual) Opportunity to teach critical thinking Opportunity to foster innovation in intervention Program of research Contribution to the Nursing body of knowledge Student Opportunity to develop critical thinking skills Opportunity to learn innovation Opportunity to start career with an edge Program of scholarship and service Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

Scenario 1  26 year old male with lung cancer  3 children under the age of 6  Treated for 2 years  Multiple pleural effusions and many complications  Now develops brain mets with heavy disease burden  Discussion with a nurse with a focus on QOL  Transitions to hospice  Gets his steak sandwich and eats it with his children sitting on his lap  Dies the next day Scenario 2  26 year old male with lung cancer  3 children under the age of 6  Treated for 2 years  Multiple pleural effusions and many complications  Now develops brain mets with heavy disease burden  Goes on ventilator for several weeks, becomes septic, wife must decide to remove patient from vent Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

Scenario 1 Female, 45, poorly managed adult onset diabetes Kidney failure requiring dialysis Patient refuses hemodialysis and instead chooses peritoneal dialysis at home (6 years) for QOL reasons Multiple complications including stroke, amputation of leg Dies at 51 Scenario 2 Female, 45, poorly managed adult onset diabetes Kidney failure requiring dialysis Patient chooses hemodialysis 3 times per week (? Years) Complications including stroke, amputation Dies (? Age) Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing

Scenario 1 85 y.o. woman falls and fractures T-12, head lac, rib fractures Hospitalized for 3 weeks inclusive of rehab Refuses all pain meds Refuses to work with PT on taking a tub bath Lives to be 98 and dies of a massive stroke Scenario 2 85 y.o. woman falls and fractures T-12, head lac, rib fractures Hospitalized for 3 weeks inclusive of rehab Asks frequently for pain meds Works with PT/OT on taking a tub bath Lives ? years Dr. Aida Abd El_razek Associate Proffesor Obstetric & Gynaecology of Nursing