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Volume 1, Issue 03 - May 1998Obtaining Consent in a Client's Home
I find that facilitating an informed consent is an ethical issue that can be especially difficult in a community care setting. My goal as a community nurse is to achieve an exchange of information between the health care provider and the client and family in their home setting. The consent may be related to anything from immediate care to a change of life style. My concern is usually to try and improve comfort, enhance recovery or prevent the needless deterioration of my client's health. In the community, the sharing of information related to a person, his/her family and the health issues involved in their lives is an integral part of any mutually agreed upon care plan. That a care plan is developed and agreed upon both by provider and client recognizes the importance of the values of both parties in the relationship. In this way, the autonomy of the client is respected and I, the health care professional, am trusted to have accurate information and to be competent and caring. This relationship of autonomy and professional competence has both practical and ethical implications. I find that when the client perceives that I am competent and that I care about him/her as a person, information sharing is easier. The longer that we have had a relationship and the more successes we have had together in improving the quality of life, the more apt she/he is to accept new knowledge and change a health-related behavior. I have often been faced with the challenge of developing a relationship with a client whose values conflicted with my own. Perhaps the client was addicted to tobacco and did not accept that this habit was compromising his/her breathing. Here the client and I disagreed about what was in his/her best interest. Or perhaps the client wanted to die peacefully at home but the client's family wanted aggressive treatment for cure rather than care for symptoms. In this case I may have agreed with the client. However, I would have had to recognize that the family is part of his/her unit. Thus the client, family and myself would have developed a care plan that may not have been exactly what the client initially wanted - but knowing that the family is more at ease with the plan, the client may also have been so. This is because of the key role relationships with close family and friends play in the preservation of quality of life in palliative clients. One case that I experienced years ago related to a client in the later stages of chronic pulmonary disease. He was a man who had very little formal education and sometimes did not understand "how the world works". He had been hospitalized, stabilized and then returned to his community. Part of his care was to include remaining on continuous oxygen at home and the hospital staff wisely authorized the oxygen company to deliver the services to his home in the country. We as community nurses knew that the introduction of anything new in his home often caused him to be upset but we had not anticipated his refusal to accept the oxygen concentrator. He was absolutely adamant that if oxygen came out of the wall at the hospital, it would do so at home as well! And if it was cost-free in the hospital, he would not pay any part of the cost in his home. It was several weeks before we were able to provide this important treatment. The process required many conversations, sketches of the machinery involved, and weekly reviews of his oxygen needs before he accepted this seemingly reasonable intervention. This situation occurred because although he was able to live in his own home with his wife, the gentleman was not able to absorb new information rapidly. Nor was he comfortable with this new technology which he found intrusive. His perspective about the oxygen was, "This is my house and I'm not having that big, noisy box (the oxygen concentrator) in my living room". He was letting us know that he was making all the decisions and that if we could not have oxygen coming out of his wall then we were not installing the concentrator. He saw any arguments about his need for oxygen as infringing on his power and actually refused to see the respiratory therapist for several weeks.
As health care professionals we had not discussed with him the delivery of oxygen in the home and how it differs from in the hospital. We assumed that he would be happy to have the service. What eventually allowed us to provide the service he needed was paying attention to the more subtle expression of his needs. This process included weekly visits to assess his health status, conversations about his family and garden, and his inevitable shortness of breath and unwillingness to return to hospital. When the choice was presented to him in this manner and he was allowed to be the decision-maker, he asked the nurse to invite the respiratory technician to return so that he could try the oxygen again. This story is true except for slight changes made to preserve confidentiality. The relationship between the health care professionals, the time that was essential to rebuild trust and respect, and the caring that he experienced from our team was essential in solving this challenge. I have found that I can rarely duplicate solutions because, of course, relationships and people are unique. My experience and my readings and conversations over the years have taught me that the preservation of a client's sense of self-determination and privacy, and a commitment to understanding the unique qualities of each person and family are critical elements to facilitating an informed decision by an informed client. It is important for health care professionals to be aware that unexpected events or behaviors in human interactions will always have ethical and practical implications. As care providers, we must accept that part of what it means to care is to appreciate the terms on which the client needs care, and that we must provide care on those terms in such a way that both our values and theirs are respected and honored. Thank you for this opportunity to exchange some thoughts about this issue. - Margaret Brewin, Palliative Care Coordinator
Review of the Network's 1998 AGM and Conference
This year's PHEN Annual Conference, entitled "Strengthening the Moral Foundations of Health Care: The Role of Ethics Committees in the Health System," was held on May 8-9, 1998 in Calgary, Alberta. The conference began on Friday evening with a tribute to John Dossetor presented by Jan Storch on behalf of the Network. Dr. Dossetor was presented with a painting as a token of appreciation for his immense contribution to the Network. Friday evening also featured Tom Noseworthy's keynote presentation on "Issues and Prospects for Canada's Health System". Dr. Noseworthy provided a thoughtful perspective of the challenges of the Canadian health system based on some of his work with the National Forum on Health. The talk prompted an excellent question and answer session which was followed by a brief reception. On Saturday morning attendees arrived for a welcome session, then considered two concurrent case studies which focused on Ethics and Personal Directives, facilitated by Gerald Robertson and Sheila Malm. After this, Michael King led a lively full group discussion about the two cases. The 1998 Annual General Meeting, held just before lunch, resulted in the appointment of two individuals to the Network Board: Finola Fogarty, an Edmonton psychiatrist, and Sheila Malm, from the Office of Medical Bioethics, University of Calgary. In addition, John Boksteyn has been reappointed to the board by the Council of Chairs of the Regional Health Authorities. John Dossetor's presentation, "Thinking About Values: 40 Years in Health Care," was a reflective look back at his career experiences and a highlight of the day. Later, participants moved to small-group workshop sessions focusing on different aspects of the role of ethics committees. Finally, a closing session by Jan Storch addressed the question of "What Makes Ethics Committees Work?" While attendance was lower than in previous years, feedback from evaluation forms shows that participants generally found the conference a very worthwhile experience. They especially noted the value of case studies and small group discussions, and indicated strong interest in the topic of Ethics and the Elderly for a future meeting. PHEN would like to encourage any members who attended the conference to contact us with any additional feedback on this year's conference or with ideas for future workshops. - Jai Shah, Research Assistant, PHEN
May/June Announcements
Administrative Changes at PHEN:
Views offered in this article are those of the author and do not necessarily reflect the position of the Provincial Health Ethics Network.
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Updated February 9, 2012
In Touch
This
month we are very pleased to have as our guest writer the Palliative
Care Coordinator for the Chinook region, Margaret Brewin.