Is the quality of life difficult to define? - It is difficult to define What principle is most relevant in discussion about Quality of life?

- Beneficience Another aspect of the principle of Beneficience, namely acting in ways that bring satisfaction to other persons. One significant feature of all medical intervention is (satisfaction for patient), but not only made well, but FEELS WELL - Quality of life, then refers to that degree of SATISFACTION o Such as experience and value about their lives as a whole o Physical health Ethical dimensions of any case in clinical medicine must not include only appropriateness of intervention (beneficence) and respect for the patients preferences (autonomy), but also the improvement of quality of life (BENEFICENCE as SATISFACTION) Definition of Quality of life - Multidimensional construct that includes performance and enjoyment of o Social roles o Physical health o Intellectual functioning o Emotional state o Life satisfaction or well-being Quality of life is highly subjective and personal evaluation.but can provide objective description..so basically, a person can tell you what they think is a quality of life, and other people can judge/observe. What are the goals of treatment? - A fundamental goal of medical care is the improvement of the quality of life for those who need and seek care, SUCH AS RELIEF OF PAIN Patients and their physician must DETERMINE what Quality of Life is desirable and attainable, how it is achieved and what risks and advantages are associated with the desired quality. If patient consents to treatment, what sort of life will the patient have during and after the treatment? - Will raise ethical questions in several ways o When there is a notable divergence between quality of life as assessed by physicians and by patients o When patients are unable to express their evaluation about the quality of life they are likely to experience o When enhancement of normal qualities is sought as a goal of medicine o When quality of life seems to have been entirely lost

o When quality of life is used as an objective standard for the distribution of scarce health care. 7 questions about how quality of life is relevant to the identification and assessment of any clinical ethical problem 1. What are the prospects, with or without treatment for a return to normal life, and what o Physical o Mental o Social Deficits might the patient experience even if treatment succeeds? 2. On what grounds can anyone judge that some quality of life would be undesirable for a patient who cannot make or express a judgment? 3. Are there biases that might prejudice the providers evaluation of the patients quality of life? 4. What ethical issues arise concerning improving or enhancing a patients quality of life? 5. Do quality-of-life assessments raise any questions regarding changes in treatment plans, such as forgoing life-sustaining treatment? 6. What are the plans and rationale to forgo life-sustaining treatment? 7. What is the legal and ethical status of suicide? Quality of life judgments are not based on a single dimension, nor are they entirely subjective or objective - They must consider 1. Personal and social function and performance 2. Symptoms 3. Prognosis 4. And the often unique values that patients ascribe to the quality of their life. Several important questions must be addressed 1. Who is making the evaluation? 2. What criteria are being used for evaluation? 3. What type of clinical decisions are justified? It is important to distinguish between 2 uses of the phrase quality of life. Failure to do so causes confusion in clinical discussions. 1. Proper meaning of quality of life a. Personal satisfaction expressed or experienced by individuals about their OWN physical, mental, and social situation 2. May also refer to a. An observers evaluation of someones elses experiences Examples of the 2 uses of quality of life Example I (personal) A 27-year-old gymnastics instructor who is paralyzed because of a cervical spinal cord lesion may say, "My life isn't as bad as it looks to you. I've come to terms with my loss and have discovered the joys of intellectual life.

Example II (personal) A 68-year-old artist who is a diabetic with a 30-year history of Type II diabetes now faces blindness and multiple amputations. She says, "I wonder if I can endure a life of such poor quality? Example III (an observer) A parent says of a 29-year-old cognitively impaired son with an IQ score of 40, "He used to seem so happy, but now he's become so restless and difficult. What kind of quality of life does he have? Example IV (an observer) An 83-year-old woman with advanced dementia, who is bedridden and tube-fed, is described by the nurses as "having poor quality of life." Usually when people observe someone who is sick/terminal/handicap/disabled/mentally retarded, the observer thinks the one who is sick/ill etc have poor quality of life, but the one who is living that sick/ill/mentally/handicap life etc actually dont feel that way (Humans are amazingly adaptive) - She then gives some examples on slide 13 of how someone can make their life better even though theyre ill/disable etc - If patients are able to evaluate and express their OWN quality of life, observers should not presume to know or judge but should seek the patients PERSONAL evaluation. - If patient cant evaluate their own because maybe theyre unconscience, clincians etc should be extremely cautious in applying their own values. Is it true that poor quality of life might mean, in general, that the sufferers experiences fall below some standard that the observe considers desirable? - Yes, its true - NEITHER patients nor clinicians should make momentous decisions Is it true that evaluation of patients quality of life may reflect bias and prejudice? - True Evaluation of quality of life, by both observer and patient, may reflect - Socioeconomic conditions (homeless), unavailability of home care, of rehabilitation or of special education. - These obstacles can be overcome Case Study: Dax Coward - Badly burned - Sustained long, painful treatment and rehabilitation - Disabilities caused by the explosion-blindness, disfigurement, crippling = would make his life intolerable and not worth living. - Refuses treatment and wishes to die - He then gradually overcomes his depression and learned to appreciate mental activities, enjoy social interaction etc

The story of Dax vividly portrays the importance of quality of life as well as the difficulty of applying differing and varying judgments of quality of life in clinical decision making.

What grounds can anyone judge that some quality of life would be undesirable for a patient who cannot make or express such a judgment? - Considerations stated under Surrogate Decision making - When no preferences of the patient are known, surrogate decision-makers are held to make judgments that serve THE BEST INTERESTS OF THE PATIENT **Application of the term (best interest) is very difficult in clinical medicine First step (for best interest) - Understand, apply complex concept, reflect on interests which all humans seem to share. It can be presumed that all humans have an interest in being alive, being capable of understanding and communicating their thoughts and feelings, being able to control and direct their lives, being free from pain and suffering, and being able to attain desired satisfactions.

**It can be presumed that ALL humans would choose to AVOID loss of these abilities. Critical assessment also consists in scrutinizing socially shared values for: - Prejudice - Discrimination - Misinformation - Stereotyping