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Living with serious chronic diseases/cancer Personality as a predictor of the development of disease • Health-aversive behaviors • Genetic factors Problems of people with serious chronic diseases • Concerns with requirements of treatment • Concerns with ongoing symptoms • Increases in pain • Fatigue • Depression • Anxiety Psychosocial intervention for cancer • Counselling • Psychotrherapy • Cognitive-behavioral therapy • Pain control techniques • Biofeedback • Relaxation • Hypnosis • Guided imagery • Music, art therapy • Group support Adaptation to cancer Coping styles: • Fighting spirit • Helplessnesshopelessness • Denial • Avoidance • Spirituality Prolongation of survival in cancer patients () Study Cunningham and Watson, 2004 revealed through interview and diary the following common themes along long-term survivors: Authenticity: • A clear understanding of what is important in one’s life Autonomy: • The perceived freedom to shape life around what was valued Acceptance • A perceived change towards enhanced self-esteem, greater tolerance for and emotional closeness to others, and a more peaceful and joyous affective experience Emotional problems in those who care • Fear • Anxiety • Depression • Hopelessness • Fatigue • Stigma • Pain • insomnia Cancer Nurs. 2006 Sep-Oct;29(5):391-9. Links Living with incurable cancer at the end of life--patients' perceptions on quality of life. Johansson CM, Axelsson B, Danielson E. • This study describes incurably ill cancer patients' perceptions of the quality of life at the end of life. Purposeful sampling was used to get as comprehensive descriptions as possible about quality of life. Five patients participated in repeated focus groups. Content analysis showed that the patients emphasized what they could perform and enjoy in daily life, not their shortcomings. Five themes were developed: "valuing ordinariness in life," "maintaining a positive life," "alleviated suffering," "significant relations," and "managing life when ill." The themes describe that the patients could participate in daily and social life despite cancer. Relation with family and palliative team deepened during the progress of illness in such that a resonance developed in communication. Other important findings were that patients' memories helped them to maintain a positive life and that the patients used individual strategies to relieve pain by emotional and physical distractions. For the patients, managing life as ill meant taking actions with creative thinking in solving problems as a way to cope and achieve quality of life. These positive findings from the focus groups have led to continued research regarding how patients with incurable cancer perceive quality of life. Palliative care Goal • To relieve the pain symptoms and the stress of serious illness whatever the diagnosis or prognosis • It can be delivered along with meds that cure • Team: doctors, nurses and social workers • Customizes treatment to meet the needs of each individual person • Cancer, chd, any condition that has pain • Patients receiving palliative care are better receiving treatment their doctor has reccomended them • Patients need care from people who are looking at them as a whole individual WHO Definition of Palliative Care • Palliative care is an approach that improves the quality of life of patients and their families facing the problem 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. Palliative care: • provides relief from pain and other distressing symptoms; • affirms life and regards dying as a normal process; • intends neither to hasten or postpone death; • integrates the psychological and spiritual aspects of patient care; WHO Definition of Palliative Care • offers a support system to help patients live as actively as possible until death; • offers a support system to help the family cope during the patients illness and in their own bereavement; • uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; • will enhance quality of life, and may also positively influence the course of illness; • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. How Successful is Palliative Care? • When the objectives just listed can be realised, the patient will end his days in comfort, he and his family will be enabled to cope with dying, they will feel secure rather than anxious, they will be assured of competent care which will not be withdrawn, they will be encouraged and enabled to be open with each other, and the family will later be offered support, if needed, in their bereavement. The actual achievement will not always reach those heights, of course, and it will be dishonest and useless to pretend that dying will always be, or could be, made dignified and comfortable. When a person is socially isolated and alienated, it would be foolish to expect palliative care to work miracles, and so, sometimes, the outcome is meagre indeed. How Successful is Palliative Care? • The usual result lies somewhere between those two extremes. While the patient is the proper centre of attention, the family will sometimes be the main recipients of the benefit from palliative care, before and after death. When a person dies after being negligently cared for, the family is left feeling angry, and they must carry that unalterable memory for the rest of their lives. When they are satisfied that good care has been provided, they have a better chance of resolving their grief normally and of experiencing a healthy bereavement. • We can only assist patients and families to meet their challenges, enabling them to use whatever resources they have already acquired up to this time, and perhaps to build on them. There may have been a lifetime habit of avoiding threats of all kinds, a psychological device which is commoner than may be supposed. In that case, the opportunity to learn the necessary skills to cope with challenge has never been taken up. Another factor of growing importance is the greater loss of religious faith in the community, whereby life is now experienced only in terms of its earthly dimensions. If there is no perception of life after death, and if one has failed to find a sufficient meaning in human experience, the end of life can be a barren time. But that is not always the case, and there is little direct association between professed religious faith and an ability to face death with acceptance. How Successful is Palliative Care? • Dying is always sad, it is often difficult and is occasionally overwhelming. The control of physical pain is probably the easiest part, when sufficient skill has been acquired, when one knows one's limitations and is then prepared to summon an expert, if necessary. Relieving severe pain is undoubtedly the single greatest boon which any person can offer another, and is often, of itself, enough to enable the patient to attend to other important aspects of his relationships of all kinds, which make the greatest contribution to personal contentment. How Successful is Palliative Care? • The patients who present the most difficult challenge are those with chronic, incurable illnesses which, while not presenting an immediate threat to life, will probably cause death at some future time. Such are those with quadriplegia, multiple sclerosis, some motor neurone diseases and so on. Some of them have an objectively low quality of life, and life for most of them will deteriorate as time passes. They evoke our pity and are the focus of much interest by those who favour euthanasia. Whatever we may think of their condition, they are generally content, and continue to value their life. • But, like others with disabling chronic illness, they become depressed from time to time and may ask for release from life. What are we to do? Apart from continuing to provide excellent care, there are no agreed human answers to their problem, as indeed there are no answers to many of life's most difficult challenges. I shall return to this point again later. Definitions • Euthanasia is the intentional killing of a person, for compassionate motives, whether the killing is by a direct action, such as a lethal injection, or by failing to perform an action necessary to maintain life, called an omission. For euthanasia to occur there must be an intention to kill. This intention makes it murder. • Physician Assisted Suicide involves providing a person with the means of committing suicide and then allowing that person to perform the act. Definitions • Murder occurs when the death of a human being is caused by an unlawful act or omission with either intent to kill or to inflict grievous bodily harm or done with reckless indifference to human life. • Manslaughter occurs when the death of a human being is caused by an unlawful act or omission, the act or omission being either criminally negligent or unlawful and dangerous. • Negligence is the failure to observe the standard of care required by the law of a sane and reasonable person in the given situation. Criminal negligence is the very high degree of carelessness going beyond mere civil negligence and satisfying a jury that the accused's conduct showed such disregard for the life and safety of another or others as to amount to a crime against the State. Conditions • 1.1 Role of doctors, including psychiatrists • How different is doctor-assisted dying compared with withdrawing life-prolonging treatment? Is it ethical to intentionally cause death? Is it compatible for a psychiatrist to work on preventing suicide, on the one hand, and take part in proceedings that may lead to doctor-assisted dying on the other? How should we help distressed people work towards decisions about their end of life care? • 1.2 Decision-making capacity • How reliable is the assessment of capacity? What are the factors that affect capacity? • 1.3 Physical disability often coexists with mental disability (co morbidity) • Conditions • Does this mean that psychiatric issues should always be considered in end of life decision making? Should psychiatrists be members of palliative care teams? • • 1.4 Depression and suicidal ideation in terminal illness • How good are physicians at diagnosing depression? A failure to diagnose depression could put people requesting PAS at risk. Should treatment of depression always be offered to patients requesting doctor- assisted suicide? • 1.5 Further effects of legislation • Will it be more harmful to deny those patients that want doctor-assisted suicide, or to expose vulnerable patients to the risk of wrongful determination of their mental capacity, and/or coercion? Would this legislation expose vulnerable patients to the risk that their desire for suicide may be taken at face value rather than treated? Would it expose all psychiatric patients to a culture where some patients are helped to die? • Self-assessment of quality of life has a significant relationship to the choice of chemotherapy and survival thresholds. • The physician's opinion regarding chemotherapy is the other important factor. • Consideration of the time pressures on physicians should be addressed urgently to improve doctor–patient communication • Control of pain, of other symptoms, solution of the psychological, social and spiritual problems improve the quality of life in incurable cancer patients.
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