In 2001 in my response to the “Clinical Ethics Revisited” article written in BMC Medical Ethics by Singer, Pellegrino and I called on clinical ethicists to pay more attention to the direct human needs of patients and families.1,2 The article didn’t get much traction in the clinical ethics community at the time. I imagine that is because those in clinical ethics were more focused on issues around clinical ethics professional development, identity and support for bioethicists in the midst of this complex, difficult work. But things have changed. We have matured in the last six years and now have a solid foundation in our community. I believe we can make a real difference in addressing patient needs and I suggest we do it sooner, rather than later.
I could argue that a new emphasis on patient centred ethics is a good thing because of the increasing emphasis on patient-centred care in our hospitals, or I could say how it nicely fits into the new inter-professional education and collaboration paradigm now popular in healthcare. I think there is an even more important argument however and that is that the narratives coming out of our own professional and personal experiences are becoming too convincing and too disturbing to ignore. If you have a friend or a family member who has had a recent encounter with the health system, chances are it is not hard to find places where things could be improved. The fact remains that healthcare is not meeting basic needs of patients and families who seek care and we do not have a deep enough understanding of the role ethics plays. The patient and family stories I heard on a weekly basis while I was working in ethics ranged from horrifying to hilarious. A recent trip down the hallway in a major Toronto hospital left me wondering who on earth thought that putting a huge sign in a patient hallway saying “standardized patient program” was in anyway a good thing as far as the people coming to the institution for care were concerned. We hear of far more tragic stories regarding patient safety and the lack of ethics infrastructure. They are problems encountered not just in one institution and not just in a unit where a vocal patient has made a complaint. The challenges regarding respect, communication, continuity, access coordination, family care, emotional and spiritual support are rampant through the systems of healthcare worldwide.
A few years ago, a number of students and faculty from the Joint Centre for Bioethics started some important work teasing out the beginning of patient-centred ethics. Peter Singer et al. wrote an article on reconceptualizing advance care planning from the patient’s perspective in 1998.3 A year later, Peter, Doug Martin and Merrijoy Kelner wrote a landmark article in JAMA on patientcentred end of life care.4 Also Steve Workman wrote his MA thesis on futility in this same era comparing healthcare professional and patient perspectives and recently published a related article.5 I propose that we extend this patient centred ethics work in the wider clinical ethics community and become leaders in Canada in incorporating patient and family perspectives in the work of clinical ethics. It seems like a big task but lessons from patient safety, palliative care and elsewhere provide models of how this can be done.
From my perspective, we can go a long way with a few initial steps. To start with, I think we need to learn how to listen to patients in a balanced, fair way. I mean really listen. We have to see it as our place to listen to these stories and let patients be the heroes in their own stories, as Arthur Frank has said. Secondly, we need to find ways to avoid describing patients with the same old clichés, for example that patients are crazy, demanding and unreasonable. For anyone who has actually done research with patients and families, one finds pretty quickly that what patients and families are asking for is often very little. And for the individuals who do get damaged by the system, maybe giving them a place to tell their story will be a space that no one else in the healthcare setting can afford or is willing to offer. But listening is only the beginning. We need a far better understanding of what patients’ and families’ ethics issues really are and we need to understand their experiences in these ethics conflicts. This may help us realize that much of the way we currently define the field of ethics is grounded in the ethical dilemmas of health care professionals. We need to do serious research. We should set up patient advisory councils in major ethics centres to help keep our work grounded in these views. And then we might have the building blocks to begin to create new patient-centred theoretical frameworks that describe common ethical problems that are inclusive of patient and family perspectives.
None of this downplays the importance of paying attention to the needs of healthcare professionals. After all, everyone in this community knows all about the high levels of moral distress among our healthcare colleagues. It is also the case that satisfied staff means more satisfied patients. I personally like the work out of the Fetzer Institute in the US on relationship-centred care and think this might be a model that would allow for a way to address the complex relationship needs emerging between patients, families, health care professionals and institutions. The essential elements of relationship-centred care include critical selfreflection
to enhance self-awareness; employing a caring, healing ethic that preserves the dignity and integrity of the patient; elimination of power abuses or inequalities; and encouraging active patient / family collaboration.
In the end, I think it comes down to committing to stand behind our ideal of being a resource to everyone in hospitals, including patients and families, and really mean it!
Sue MacRae, Former Deputy Director, University of Toronto Joint Centre for Bioethics
This piece was adapted from the original article printed in the Joint Centre for Bioethics Newsletter in September 2007.References:
1. Benatar, SR, Bhutta, ZA, Daar, AS, Hope, T, MacRae, S, Roberts, LW, Sharpe, VA. Clinical ethics revisited: responses. BMC Med Ethics. 2001. 2: E2 11346457
2. Singer, PA, Pelligrino, ED, Siegler, M. Clinical ethics revisited. BMC Medical Ethics 2001. 2:1
3. Singer, PA, Martin, DK, Lavery, JV, Thiel, EC, Kelner, M and Mendelssohn, DC. Reconceptualizing advance care planning from the patient?s perspective. Arch Intern Med. 1998. 158: 879-884.
4. Singer, PA. Martin, DK and Kelner M. Quality end-of-life care: patients? perspectives. JAMA 1999. 281: 163-168.
5. Workman, S. Mann, OE. No control whatsoever: end-of-life care on a medical teaching unit from the perspective of family members. QJM. 2007. 100(&): 433-440.
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