Adapted short extracts from the 1996 testimony of Kathleen M. Foley, M.D., the Director of the Open Society Institute's Project on Death In America, to the American Judiciary Subcommittee on the Constitution. The full text and bibliography can be found on the web (at www.soros.org/death.html).
It is well recognised that debates on physician assisted suicide and euthanasia often emerge in societies when a loss of community is perceived, and at times when individual rights assume greater importance than societal rights.
The re-emergence of advocacy groups for both physician assisted suicide and euthanasia in the 1980s and 1990s has come from numerous factions and multiple factors.
These groups include both physician advocates and public advocacy groups, including the Hemlock Society and Compassion in Dying, to name only a few.
The multiple medical, social and economic factors framing this discussion include: advancements in high technological medical support systems for patients with respiratory and cardiac failure; changes in the trajectory of dying, with large numbers of patients with cancer and AIDS alive for months and years following the diagnosis of an incurable illness; the increasing age of the population; the greater emphasis on patient autonomy; a concerted policy shift from societal to individual rights; and the highly debated limitations in health care resources, particularly for patients with chronic, incurable illness.
At the core of this debate is the issue of patient autonomy, with an increasing focus on patient-centred care, characterised by the wide use of living wills, advance directives and health care proxies to protect patients from the medical systems of physicians and hospitals who care for them. This debate requires an understanding of the complexity of the medical issues.
In 1994 there were almost 2.3 million deaths in the United States. The three leading causes of death were heart disease (32 per cent), malignant neoplasms (24 per cent), and cerebrovascular disease (7 per cent). HIV infection on an age related basis is the most common cause of death for white men between the ages between of 25 and 44.
From death certificate data, approximately 62 per cent of the 2.3 million deaths occur in hospitals, 16 per cent occur in nursing homes (38 per cent of those over 85 die in nursing homes), 17 per cent occur in homes and depending upon the age group, the rate of in-hospital deaths ranges from 48 to 91 per cent.
Data from the National Hospice Organisation indicates that approximately 40 per cent of cancer deaths in the United States occur in patients cared for by hospice programmes and approximately 35-40 per cent of deaths from AIDS occur in patients cared for by hospices.
Numerous studies in both cancer and AIDS patients have demonstrated the high prevalence of physical and psychological symptoms, as well as existential distress.
Concurrent with these physical symptoms have been a variety of well-described psychological symptoms
'Psychiatric problems occur in upwards of 60 per cent of patients with advanced cancer'
Various factors adversely influence the prevalence and severity of psychological distress, including:
The prevalence of a variety of other factors that lead to distress are referred to as existential distress. Common existential issues for patients with advanced disease include:
This existential distress may be related to past, present or future concerns. Current personal integrity is threatened by the variety of medical therapeutic approaches with alterations in body image, and both intellectual, social and professional function, as well as in relationships with intimacy and sexuality.
'Depression occurs in at least 25 per cent of cancer patients and up to 70 per cent of patients with advanced disease'
If we look at the interface between the lack of appropriate treatment of symptoms and patients' requests for suicide, there is good evidence to suggest that these physical and psychological symptoms are major suicide vulnerability factors for patients with both cancer and AIDS. Uncontrolled pain is recognised as a contributing factor, and persistent pain interferes with the patient's ability to receive support from families and others. The literature suggests that cancer patients with pain are vulnerable to suicide due to the increased likelihood of the presence of multiple risk factors, such as depression, delirium, loss of control, and hopelessness. Depression occurs in at least 25 per cent of cancer patients, and up to 70 per cent of patients with advanced disease.
In a study by the Psychiatry Service at Memorial Sloan-Kettering Cancer Centre of suicidal cancer patients, a third of patients were diagnosed with a major depression, 20 per cent with delirium, and 50 per cent with an adjustment disorder with anxious and depressed features at the time of evaluation.
Suicidal ideation without intent to act occurred in 17 per cent of 185 cancer patients with pain.
In the AIDS population, a prior suicide history has been noted to be the most prominent vulnerability factor.
This same data has now been demonstrated in terminally ill patients in a study by Chochinov, who looked at the desire for death in patients with far advanced disease. This data again supported the fact that there was a significant degree of depression in this population of patients, which though untreated, was yet the driving force for patient's request for physician-assisted death.
Fatigue, characterised by exhaustion of physical, emotional, spiritual, financial, familial, communal, or other resources, also increases the risk for suicide in both the cancer patient and the AIDS patient. The degree to which both patient fatigue and family fatigue play a role is expressed in statements and suicide notes. Patients perceive themselves to be a burden to themselves and to their families. Loss of control and a sense of helplessness in the face of cancer are also important factors. Impairments or deficits induced by cancer or cancer treatments, including loss of mobility, paraplegia, loss of bowel or bladder function, amputation, aphonia, sensory loss, inability to eat or swallow, appear to increase the risk of suicide.
However, it is the loss of cognitive facilities, characterised by both delirium and disinhibition that are most closely correlated to a patient's successful suicide.
The previous sections point up the critical reality of how sick these patients are and the magnitude of the need for a broad palliative care program that addresses their need to maintain a quality of life at the end of their lives. There is good evidence to suggest that one of the major barriers to patients receiving appropriate end of life care is physicians' lack of knowledge and training to treat pain and other symptoms, and to assess and treat psychological and existential issues. Physicians are inadequately trained and economically deterred from providing humane compassionate care.
'Physicians are inadequately trained and economically deterred from providing humane compassionate care'
The dearth of professional knowledge stems in part from the lack of education in medical school, residency and fellowship training programs. This lack of knowledge is further magnified by the lack of an institutional commitment to the care of patients at the end of life. In the academic year 1993 to 1994, only five of the 126 medical schools in the United States offered a separate required course on the care of the dying.
This lack of medical knowledge impacts on the quality of terminal care in hospitals.
In the study by Solomon, who surveyed 687 physicians and 759 nurses in five hospitals, 47 per cent of all respondents and 70 per cent of the house officers acknowledged that they had violated their conscience when providing care to terminally ill patients. By a ratio of four to one, respondents identified the provision of overly burdensome treatment, rather than under-treatment, as a concern.
When asked how often they were concerned about the inappropriate use of mechanical ventilation in terminal care, 60 per cent of medical attending physicians, 54 per cent of surgical attending physicians and 78 per cent of house officers indicated that they were sometimes or almost always concerned.
Regarding cardiopulmonary resuscitation, 61 per cent of medical attending physicians, 58 per cent of surgical attending physicians, and 83 per cent of house officers expressed a similar frequency of concern.
Solomon also reported that the dominant concern of physicians and nurses about pain management was under-treatment. 85 per cent of medical attending physicians, 83 per cent of surgical attending physicians and 84 per cent of house officers indicated that the most common form of narcotic abuse in the care of the dying is the under-treatment of their pain.
Solomon and colleagues found that under-treatment prevailed, despite the fact that 89 per cent of medical attending physicians, 84 per cent of surgical attending physicians and 91 per cent of house officers agreed that it is possible to prevent dying patients from feeling much pain.
Solomon's study points out the conflicts between practice and belief that only really can be addressed by broad public and professional education programs.
Furthermore, some archaic state laws and regulations restrict the number of doses of opioids that can be written, thereby impeding appropriate prescribing for the relief of cancer pain. Moreover, pain medications are expensive, and because they are not paid for by Medicare, these charges place undue financial burden on patients and families.
Our institutionalisation of death has further exacerbated and exalted the role of physicians in regulating death.
Improved patient/physician communication, respect for patient-centred care, better physician judgement to withdraw or withhold care, and familiarity with the principles and practice of palliative care would definitely reduce the need to legalise physician assisted suicide and euthanasia.
We need broad public discussions to address what Americans value, to address what kind of a society we are, and how we care for our dying, and to address the complex issues.
'A yes/no vote on physician assisted suicide is an attempt to solve a very complex issue with a simplistic technical approach'
The simple attempt to solve these problems with a yes/no vote on physician assisted suicide is an attempt to solve a very complex issue with a simplistic technical approach.
We must focus our efforts and attention on improving the care of the dying.
It will conceivably be easier for a doctor to prescribe lethal medication than to care for a dying patient, especially when the patient is without family or friends, or comes from socially disadvantaged groups.
In the current climate of a rapidly changing health care reimbursement system, and without universal access to care, such laws, if implemented, place the dying, who are most vulnerable citizens, at risk of death, as the cheaper, easier way to limit excessive health care costs.
Kathleen M. Foley, M. D., Director, Project on Death in America, Open Society Institute, 400 West 59th St, New York, NY 10019, USA (tel 212 757 2323; fax 212 548 4679; e-mail: mcallaway@sorosny.org; web: www.soros.org/death.html).
This webpage forms part of the Global Ideas Bank (www.globalideasbank.org).
Book
Orders: To order any of the Natural Death Centre or
other books that make up the Global Ideas Bank.
";
echo $mb_link;
echo "
";
if ( session_is_registered('navigation')) {
echo " Return to Message Board's last display of selected messages";
}
?>