Although attention to healthcare ethics in rural areas has increased, specific focus on rural palliative care is still largely under-studied and under-theorized. The purpose of this study was to gain a deeper understanding of the values informing good palliative care from rural individuals' perspectives.
We conducted a qualitative ethnographic study in four rural communities in Western Canada. Each community had a population of 10, 000 or less and was located at least a three hour travelling distance by car from a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95 interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompanied rural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo.
This study illuminated the core values of knowing and being known, being present and available, and community and mutuality that provide the foundation for ethically good rural palliative care. These values were congruent across the study communities and across the stakeholders involved in rural palliative care. Although these were highly prized values, each came with a corresponding ethical tension. Being known often resulted in a loss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. The values of community and mutuality created entitlement issues, presenting daunting challenges for coordinated change.
The values identified in this study offer the opportunity to better understand common ethical tensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular, these values shed light on problematic health system and health policy changes. When initiatives violate deeply held values and hard won rural capacity to address the needs of their dying members is undermined, there are long lasting negative consequences. The social fabric of rural life is frayed. These findings offer one way to re-conceptualize healthcare decision making through consideration of critical values to support ethically good palliative care in rural settings.
Four main clinical issues need to be considered for HIV-positive individuals and couples with respect to pregnancy planning and counselling: (1) pre-conceptional health; (2) transmission from mother to infant, which has been significantly reduced by combined antiretroviral therapy; (3) transmission between partners during conception, which requires different prevention and treatment strategies depending on the status and needs of those involved; and (4) management of infertility issues. The objective of the Canadian HIV Pregnancy Planning Guidelines is to provide clinical information and recommendations for health care providers to assist HIV-positive individuals and couples with their fertility and pregnancy planning decisions. These guidelines are evidence- and community-based and flexible, and they take into account diverse and intersecting local/population needs and the social determinants of health.
Intended outcomes are (1) reduction of risk of vertical transmission and horizontal transmission of HIV, (2) improvement of maternal and infant health outcomes in the presence of HIV, (3) reduction of the stigma associated with pregnancy and HIV, and (4) increased access to pregnancy planning and fertility services.
PubMed and Medline were searched for articles published in English or French to December 20, 2010, using the following terms: "HIV" and "pregnancy" or "pregnancy planning" or "fertility" or "reproduction" or "infertility" or "parenthood" or "insemination" or "artificial insemination" or "sperm washing" or "IVF" or "ICSI" or "IUI." Other search terms included "HIV" and 'horizontal transmission" or "sexual transmission" or "serodiscordant." The following conference databases were also searched: Conference on Retroviruses and Opportunistic Infections, International AIDS Conference, International AIDS Society, Interscience Conference on Antimicrobial Agents and Chemotherapy, the Canadian Association of HIV/AIDS Research, and the Ontario HIV Treatment Network Research Conference. Finally, a hand search of key journals and conferences was performed, and references of retrieved articles were reviewed for additional citations. Subsequently, abstracts were categorized according to their primary topic (based on an outline of the guidelines) into table format with the following headings: author, title, study purpose, participants, results and general comments. Finally, experts in the field were consulted for their opinions as to whether any articles were missed.
The quality of evidence was rated using the criteria described in the Report of the Canadian Task Force on Preventive Health Care. Recommendations for practice were ranked according to the method described in that report (Table) and through use of the Appraisal of Guidelines Research and Evaluation instrument for the development of clinical guidelines.
The Society of Obstetricians and Gynecologists of Canada, Women and HIV Research Program, Women's College Research Institute, Women's College Hospital, University of Toronto, Abbott Laboratories Canada, the Ontario HIV Treatment Network, the Canadian Institutes of Health Research, and the Canadian HIV Trials Network.
Insite, a supervised injection facility in Vancouver, British Columbia, is an evidence-based response to the ongoing health and social crisis in the city's Downtown Eastside. It has been shown that Insite's services increase treatment referrals, mitigate the spread and impact of blood-borne diseases and prevent overdose deaths. One of the goals of this facility is to improve the health of those who use injection drugs. Nurses contribute to this goal by building trusting relationships with clients and delivering health services in a harm reduction setting. The authors describe nursing practice at Insite and its alignment with professional and ethical standards of registered nursing practice. Harm reduction is consistent with accepted standards for nursing practice as set out by the College of Registered Nurses of British Columbia and the Canadian Nurses Association and with World Health Organization guidelines.
People who are street involved such as those experiencing homelessness and drug use face multiple inequities in health and access to health care. Morbidity and mortality are significantly increased among those who are street involved. Incorporation of a harm reduction philosophy in health care has the potential to shift the moral context of health care delivery and enhance access to health care services. However, harm reduction with a primary focus on reducing the harms of drug use fails focus on the harms associated with the context of drug use such as homelessness, violence and poverty.
Ethical analysis of the underlying values of harm reduction and examination of different conceptions of justice are discussed as a basis for action that addresses a broad range of harms associated with drug use.
Theories of distributive justice that focus primarily on the distribution of material goods are limited as theoretical frameworks for addressing the root causes of harm associated with drug use. Social justice, reconceptualised and interpreted through a critical lens as described by Iris Marion Young, is presented as a promising alternative ethical framework.
A critical reinterpretation of social justice leads to insights that can illuminate structural inequities that contribute to the harms associated with the context of drug use. Such an approach provides promise as means of informing policy that aims to reduce a broad range of harms associated with drug use such as homelessness and poverty.
Migration flux is being transformed by globalization, and the number of people with either undocumented or with a precarious status is growing in Canada. There are no epidemiological data on the health and social consequences of this situation, but clinicians working in primary care with migrants and refugees are increasingly worried about the associated morbidity. This commentary summarizes findings from a pilot study with health professionals in the Montreal area and suggests that the uninsured population predicament is a national problem. Although ethical and legal issues associated with data collection by clinicians, institutions and governments need to be examined, estimating the public health consequences and long-term cost associated with problems in access to health care due to migratory status should be a priority. Current regulations and administrative policies appear to be at odds with the principles of equal rights set out by the Canadian Charter of Rights and Freedoms and the UN Convention on the Rights of the Child. Beyond the commitment of individual clinicians, Canadian medical associations should take an advocacy role and scrutinize the ethical and medical implications of the present system.