Clinical Correlates Of The Wish To Hasten Death Among The Terminally Ill
Funder
National Health and Medical Research Council
Funding Amount
$131,360.00
Summary
There is little research that has directly examined the role of the health professional in a patient's wish to die and the implications of this for the support and development of services to provide care to a dying patient. The aim of this study is to examine factors in the health service, clinical care and social environment that influence the wish to hasten death among terminally ill patients. This is an issue of increasing importance in our community as legislative change is undertaken to ena ....There is little research that has directly examined the role of the health professional in a patient's wish to die and the implications of this for the support and development of services to provide care to a dying patient. The aim of this study is to examine factors in the health service, clinical care and social environment that influence the wish to hasten death among terminally ill patients. This is an issue of increasing importance in our community as legislative change is undertaken to enable assisted suicide in the terminally ill. In particular, there is very limited published research on these issues which have accessed a subject pool of patients who are based in services that specifically provide care for the terminally ill. A specific focus of this study is to examine the factors within the doctor-patient relationship that may influence a patient's wish to hasten death. The doctor's experience of subjective burden in caring for a dying patient, level of confidence in patient management and features of the doctor-patient relationhip will be assessed. This will essentially be an exploratory study which will attempt to establish methodologies that will help to increase an understanding of why some patients request euthanasia, thus leading to the establishment of sound management strategies, as well as contribute empirical data to the euthanasia debate.Read moreRead less
A National Analysis Of The Palliative And Supportive Care Needs Of Families Whose Children Die From Cancer
Funder
National Health and Medical Research Council
Funding Amount
$68,250.00
Summary
Palliative and supportive care services for children dying from cancer are underdeveloped in the paediatric setting. There is an increasing awareness of the need for comprehensive care for these dying children and their families, however, there is a striking lack of evidence based literature on which to base paediatric palliaitive and supportive care models of care. This study is the first of its kind in the area of paediatric supportive and palliative care in Australia. This study will involve ....Palliative and supportive care services for children dying from cancer are underdeveloped in the paediatric setting. There is an increasing awareness of the need for comprehensive care for these dying children and their families, however, there is a striking lack of evidence based literature on which to base paediatric palliaitive and supportive care models of care. This study is the first of its kind in the area of paediatric supportive and palliative care in Australia. This study will involve five Australian states (WA, SA, VIC, NSW and QLD). To answer these research questions, a retrospective study will be undertaken because of: a)the profound impact that caring for a dying child has on the family, b) the potential effects on parents of participating in research related to the care of their dying child, and c) it has been shown that research undertaken after-death is an important method for evaluation of the quality of palliative care. The study will provide broad and detailed description of the palliative and supportive care needs of families whose died from cancer, as well as the types of care that may be required. The study will therefore, address four research questions: 1. What are the supportive and palliative care needs of families of children who have died from cancer? 2. To what extent have the supportive care and palliative care needs of families been met in both the hospital and community settings? 3. How were the supportive and palliative care needs of families of children who died from cancer met? 4. What were the perceived barriers and facilitating factors associated with the supportive care and palliative care received by families whose children died from cancer? This study is the first phase of a four-phase research program that will culminate in the development and testing of models for the provision of palliative and supportive care for parents of children with life-limiting conditions.Read moreRead less
Certain Death In Uncertain Time: A Qualitative Study Of The Experience Of Advanced Ovarian Cancer.
Funder
National Health and Medical Research Council
Funding Amount
$221,755.00
Summary
Modern medicine aims to find effective treatments for life-threatening diseases. Cures are seldom found, however. More typically, rapidly fatal diseases gradually become less rapidly fatal. Consequently, there is a category of patients who are certain they will die from their disease or a related factor, but who are equally uncertain as to whether they have weeks or years left to live. It is difficult to discuss this predicament because we do not even have a name for it, let alone a useful termi ....Modern medicine aims to find effective treatments for life-threatening diseases. Cures are seldom found, however. More typically, rapidly fatal diseases gradually become less rapidly fatal. Consequently, there is a category of patients who are certain they will die from their disease or a related factor, but who are equally uncertain as to whether they have weeks or years left to live. It is difficult to discuss this predicament because we do not even have a name for it, let alone a useful terminology to describe it. The absence of discussion exacerbates patients' social isolation. Also, the quality of their remaining life, and the quality of the care they get, depends heavily on the quality of understanding and communication within the social systems that support them. A growing proportion of patients in developed countries fall into this category, including the 1200 Australian women who are diagnosed each year with advanced ovarian cancer. This study aims to increase our understanding of the experience of certain death in uncertain time by recruiting a group of 20 women with advanced ovarian cancer, and interviewing them every few months over three years. The study will explore all aspects of the experience of having advanced ovarian cancer, and generate a terminology for it - one that grows out of the women's own language. The study will inform the organisation and delivery of clinical care and services to women with ovarian cancer. It will also inform patient education programs, and help to tune medical education to the particular needs and perceptions of patients who are experiencing the certainty of death in uncertain time. Finally, the researchers will also explore the implications of the findings for medical ethics and health law, and for communication, information and decision-making in cancer medicine.Read moreRead less
Evaluating Novel Methods For Delivering Non-pharmacological Interventions For Dyspnoea In Cancer Patients
Funder
National Health and Medical Research Council
Funding Amount
$506,036.00
Summary
Dyspnoea, or breathlessness, can be a common and distressing problem for people with lung cancer. This study aims to test the effectiveness of a patient education program which includes breathing exercises and psychosocial support for helping patients with lung cancer to control their dyspnoea. The education program is novel in that it applies best available evidence about methods for providing information and support for people with cancer to enhance the effectiveness of the intervention. The s ....Dyspnoea, or breathlessness, can be a common and distressing problem for people with lung cancer. This study aims to test the effectiveness of a patient education program which includes breathing exercises and psychosocial support for helping patients with lung cancer to control their dyspnoea. The education program is novel in that it applies best available evidence about methods for providing information and support for people with cancer to enhance the effectiveness of the intervention. The study will test whether the intervention reduces a patients' feelings of breathlessness, improves their ability to function, and minimises their emotional distress. The intervention being evaluated in this study has been developed so that it can be readily incorporated into routine clinical practice. The study will also examine the effectiveness of this intervention over time, to identify which patients may benefit from this approach and at what times the intervention may be of most use. The information gained from this study will provide more specific guidance to practitioners for targeting intervention approaches to each individual patient's needs.Read moreRead less
Improving QOL At The End Of Life: A Randomised Controlled Trial Of A Doctor-nurse-patient Intervention.
Funder
National Health and Medical Research Council
Funding Amount
$687,655.00
Summary
This project aims to promote mutual understanding between patients with incurable disease, carers and clinicians about prognosis, end of life issues and treatment goals in order to improve the quality of remaining life. Currently many patients do not understand their prognosis and make poor decisions about treatment, receiving costly, futile and invasive treatments just days before death. This project will empower patients and doctors to better discuss these issues.
Randomised Double-blind Controlled Trial Of Oxygen Versus Air To Palliate Intractable End-of-life Dyspnoea When Pa02 >55
Funder
National Health and Medical Research Council
Funding Amount
$463,318.00
Summary
Shortness of breath at the end-of-life is one of the most feared symptoms. Unlike most other symptoms, it worsens as death approaches. Despite the fact that more than 50,000 Australian will die an expected death in the next year, of whom the majority will have breathlessness toward the end-of-life, we know little about how best to treat this symptom. Oxygen is frequently introduced but we have not identified whether it is more effective than medical air, and, if it is more effective, which patie ....Shortness of breath at the end-of-life is one of the most feared symptoms. Unlike most other symptoms, it worsens as death approaches. Despite the fact that more than 50,000 Australian will die an expected death in the next year, of whom the majority will have breathlessness toward the end-of-life, we know little about how best to treat this symptom. Oxygen is frequently introduced but we have not identified whether it is more effective than medical air, and, if it is more effective, which patients would most benefit from it. Because of this lack of evidence, oxygen is only funded in Australia in community settings for people who have severely low oxygen levels in their blood. Palliative oxygen is provided on a compassionate basis at times but this is on an ad hoc basis and does not ensure equitable access for people at the end of life who experience shortness of breath. This multi-centre study will compare oxygen and air, with neither the participant nor caring clinicians knowing which treatment they will receive. After careful explanation, volunteers who agree to participate will be asked to use the oxygen machine for at least 15 hours each day for 7 days and fill out a diary twice each day. Five centres across Australia are planning to enroll 240 participants in this study. Outcomes will include whether the sensation of breathlessness has improved, the overall quality of life while being treated, the ability to perform activities of daily living and any side effects experienced. This study is eagerly awaited by clinicians and health planners not only in Australia but in North America and Europe. This study will provide data in a long-standing international debate about the role of oxygen in people with relatively normal levels of oxygen in their blood who suffer from shortness of breath at the end-of-life.Read moreRead less