Passik SD, Kirsh KL, McDonald MV, et al. J of Pain & Symptom Manage 2000; 19(4):274-286.

Prepared by: : Dr. Robin Fainsinger

Received during: Journal Rounds on the Tertiary Palliative Care Unit, Grey Nuns Hospital

Abstract:

The clinical assessment of drug-taking behaviors in medically ill patients with pain is complex and may be hindered by the lack of empirically derived information about such behaviors in particularly medically ill populations. To investigate issues surrounding the assessment of these behaviors, we piloted a questionnaire based on the observations of specialists in pain management and substance abuse. This preliminary questionnaire evaluated medication use, present and past drug abuse, patients' beliefs and the risk of addiction in the context of pain treatment, and aberrant drug-taking attitudes and behaviors. This instrument was piloted in a mixed group of cancer patients (N= 52) and a group of women with HIV/AIDS (N = 111). Reports of past drug use and abuse were more frequent than present reports in both groups. Current aberrant drug-related behaviors were seldom reported, but attitude items revealed that patients would consider engaging in aberrant behaviors, or would possibly excuse them in others, if pain or symptom management were inadequate. Aberrant behaviors and attitudes were endorsed more frequently by the women with HIV/AIDS than by the cancer patients. Patients greatly overestimated the risk of addiction in pain treatment. We discuss the significance of these findings and the need for cautious interpretation given the limitations of the methodology. This early experience suggests that both cancer and HIV/AIDS patients appear to respond in a forthcoming fashion to drug-taking behavior questions and describe attitudes and behaviors that may be highly relevant to the diagnosis and understanding management of substance use among patients with medical illness.

Comments:

Strengths/uniqueness: An initial effort to characterize drug related behaviors and attitudes in cancer and AIDS patients, by using a comprehensive pilot survey. Confirms a high frequency of abnormal drug behavior and attitudes in women with HIV/AIDS. The overestimation by all patients of the addiction risk reinforces the need for education.

Weakness:The questions on drug use do not capture the time elapse and duration of past behavior. The authors highlight the other limitations of small sample size, potential bias in questionnaire design and subjects' response, patients limited to an academic cancer centre or women with HIV/AIDS, and inability to do subgroup analysis.

Relevance to Palliative Care: This study highlights the wide potential variation in different palliative care populations in patterns of past and present aberrant drug-taking behaviors and the need for a clinically useful screening approach. The implications for psychosocial and pharmacological management of symptoms such as pain, as well as any underlying aberrant behavior, remains unclear.

Current Perspectives on Pain in AIDS (Second of Two Parts). Downloadable PDF File

Breitbart W, Dibiase L. Oncology 16:964-968, 2002.

Prepared by: : Dr. Debra Slade

Received during: Case Rounds, September 10, 2002

Abstract:

As active participants in the care of patients with acquired immunodeficiency syndrome (AIDS), oncologists need to be aware of the many facets of pain management in this population. This two-part article, which began in the June 2002 issue, describes the prevalence and types of pain syndromes encountered in patients with AIDS and reviews the psychological and functional impact of pain as well as the barriers to adequate pain treatment in this group and others with human immunodeficiency virus (HIV)-related disease. Finally, principles of pain management, with particular emphasis on controlling pain in HIV infected patients with a history of substance abuse, are outlined.

Comments:

Strengths/uniqueness:
A thorough review of treatment of pain at the end of life in HIV-infected patients and particularly for those continuing to abuse drugs. This paper includes a discussion of nonpharmacologic interventions (eg neurosurgical options) and stresses a multidimensional approach. The importance of carefully defining the pain syndrome is emphasized.

Weaknesses:
Although a multidimensional approach is stressed, it would have been very useful to know which counselling techniques have been found to be most effective with this population. Contracts are very commonly used with patients who continue to abuse drugs but are not specifically mentioned in the article. Consideration of the impact of a methadone maintenance program on the use of methadone in the treatment of
neuropathic pain syndromes in these patients would have been useful.

Relevance to Palliative Care:
As HIV-infection therapy advances, AIDS presents more as a chronic disease. Undoubtedly we will be seeing greater numbers of HIV-infected palliative patients dying of chronic AIDS-related illnesses or of causes more commonly found in the current palliative population. It is increasingly important to be able to recognize and manage specific concerns which affect this population.

Euthanasia and Physician-Assisted Suicide among Patients with Amyotrophic Lateral Sclerosis in the Netherlands Downloadable PDF File

Jan H. Veldink,, John H.J. Wokke et al. N Engl J Med 2002;346:1638-44

Reviewed by: Dr Y. Tarumi
Presented during: Case Rounds, RPCP

Abstract
Background: Amyotrophic lateral sclerosis (ALS) is a disease that causes progressive paralysis leading to respiratory failure. Patients with ALS may consider physician-assisted suicide. However, it is not known how many patients, if given the option, would actually decide to end their lives by physician-assisted suicide or euthanasia nor at what stage of the disease they would choose to do so. Methods: We identified physicians of 279 patients in the Netherlands with a diagnosis of ALS who died between 1994 and 1999. Physicians were asked to fill out a validated questionnaire about the end-of-life decisions that were made. Of 241 eligible physicians, 203 returned the questionnaire (84 percent). Results: Of the 203 patients, 35 (17 percent) chose euthanasia and died that way. An additional six patients (3 percent) died as a result of physician-assisted suicide. Patients to whom religion was important were less likely to have died as a result of euthanasia or physician-assisted suicide. The choice of euthanasia or physician-assisted suicide was not associated with any particular characteristics of the disease or of the patient's care, nor was it associated with income or educational level. Disability before death was significantly more severe in patients who died as a result of euthanasia than among those who died in other ways. Physician-assisted suicide appeared to occur somewhat earlier in the course of the disease than did euthanasia. An additional 48 patients (24 percent) received palliative treatment, which probably shortened their lives. Conclusions: In the Netherlands, we found that one in five patients with ALS died as a result of euthanasia or physician-assisted suicide.

Comments:

Strengths/Uniqueness:
A previously reported survey showed frequency of physician assisted suicide or euthanasia for general medical diagnosis as 2.7 %, for malignancy as 10 %, and for HIV as 20 % in the Netherlands. A report from Oregon, US, showed 56 % of ALS patients supported physician assisted death with high correlation to lower religiosity, higher education, male patients, strong sense of hopelessness. This latest report aids integration of previous results about the decision-making process regarding physician-assisted death for ALS patients.
This is the first report of the number of patients who actually decided to end their life by physician- assisted suicide or euthanasia. The definition of physician assisted suicide and euthanasia in this survey is clear and easy to understand.

Weaknesses:
Due to the retrospective cohort nature of the study, there are possible information bias and recall bias (some events occurred several years ago). Generalization is limited due to the unique context of Dutch culture, law, and health care system.
There were no power calculations reported.

Relevance to Palliative Care: We encounter limited number of ALS cases compared to the number of cancer patients. Due to the nature of the disease there is always intensive decision making involved as well as symptom management issues. This article helps to reflect on the limited established palliative care available for neurological degenerative diseases, and highlights the need for validation of the impact of palliative care on patients with progressive neurological disease.