Patient and Family Centred Ethics

The March 2008 Newsletter of the Canadian Bioethics Society includes pointed calls to action on the ethics of patient and family centred care by President Patricia Rodney and Sue MacRae, Former Deputy Director, University of Toronto Joint Centre for Bioethics. They are short and I quote them in full below, please view CBS's March 2008 newsletter to see them in the original, as well as the short analysis of concerns about the College of Physicians and Surgeons of Manitoba (CPSM) “Statement on Withholding and Withdrawing Life-Sustaining Treatment”. Bioethicist.ca has an archive of past newsletters.

Sickkids Hospital has a Department of Bioethics affiliated with the University of Toronto Joint Centre for Bioethics. Unfortunately the website for the department is currently missing in action (I emailed the web team and hopefully the resources can be recovered). The Director of the Department of Bioethics at Sickkids Hospital is currently Christine Harrison whose primary area of research interest is identified as "ethical aspects of health care decision-making for and by children, complementary and alternative health care, and end-of-life care for children."

Christine Harrison is also past president of the Canadian Bioethics Society and her February 2002 President's Letter tells the poignant personal story of her mother's death and lessons she drew from it:

"This year’s annual meeting was the first one I have missed. The day I was meant to fly to Winnipeg my mother was admitted to hospital; she died a week later. A couple of months earlier, after two misdiagnosed UTIs, she discovered she had very advanced bladder cancer, for which she declined surgery. (This was fortunate, as another ‘medical error’ had missed the fact that it had already spread to her spine). There is no palliative care physician in our city of over 100,000 people, and her pain was not managed well. I don’t think that, for her, her death was particularly better or worse than for many others. I would like to be able to say that she got good, or even adequate, medical care in the hospital, but I cannot because I never spoke to her physician. Her nurses, social worker, and case manager promised to tell him that I had questions and would appreciate being well informed. I can’t say if this was charted, as I was refused permission to look at her chart. He did write me an almost legible note on Monday, saying that he had a hunch that my mother would be discharged by the end of the week (she died on Wednesday). We waited for some test results for several days (we thought she might have had a stroke) – finally my mother’s ‘roommate’ told us that the doctor had told my mother several days earlier the results of the tests (my mother did not remember this). We received flowers from her physician after her death, but I have still never spoken to him.

As a daughter I am angry and sad. As a bioethicist I am frustrated. Over the past two decades or more we have argued eloquently of the obligations to care for the dying, attend to their pain and suffering, and to the needs of their families. Studies have been published identifying these needs. We write policies and reports, we speak, and we teach and teach and teach. Yet from the stories I am told my experience appears to be the norm rather than the exception."

Christine ends by stating: "We do need to work together in a variety of ways to ‘speak up’ more effectively so that our words and our convictions result in positive changes in the world –
otherwise, we’re just talking to each other." Read the full letter in its original to see some of the work-a-day detail when medical professionals and ethicists viewpoints collide.

Canadian Bioethics Society President Letter, March 2008 - Patricia (Paddy) Rodney

"…it is vital that you are aware not only of your working definitions of family and health but also of how those definitions are shaping and perhaps constraining your practice (Hartrick Doane & Varcoe, 2005, p. 24)."

I believe that Hartrick Doane and Varcoe’s call is a moral imperative — an imperative
that is in urgent need of more attention in contemporary health care ethics work. Nelson and Nelson (1995) observed over a decade ago that health care agencies and families were two systems of care that were “rubbing each other the wrong way” (p. ix). Sadly, this remains true today. In health care delivery and health care ethics work we encounter, for instance, angry relatives in acute care who are fearful we will too hastily withdraw treatment from their loved ones; parents coping with complex and serious illnesses of their children and trying to decide what is in the children’s best interests; frail seniors who are isolated from their families and coping at home on a razorthin margin of safety; exhausted women looking after children and seriously ill relatives in the home; rural families trying to cope with the costs and disruption of sending their loved ones to the big city for specialized treatment; and homeless people who are seriously marginalized in their attempts to access health care and have no family present to advocate for them.

Improving the ethics of practice with families requires that all of us operating in health care re-visit what we think we know. Following through with the examples above, this means that we need to realize that what we see as families “demanding” excessive treatment may in fact be a reflection of their fear of abandonment; “pushy” parents may have quite legitimate interests in having their voices and the voices of their children more carefully attended to in treatment decision–making; frail seniors are not necessarily “choosing” to “live at risk” but may be coping as best they can with minimal resources at their disposal; women caring for children and seriously ill relatives are not necessarily just fulfilling their "responsibility” but may be seriously constraining their own quality of life; rural families ought not to have to “bear the consequences” of where they have “chosen” to live; and homeless people are not “frequent flyers”, but are people who distrust the mainstream health care system and often seriously delay accessing badly needed acute care.

Ultimately, then, in contemporary health care ethics work we need to foster a better understanding of how sociopolitical contexts affect health and health care for families, and we need to foster a much more finely tuned ability to reflect on widely held biases and assumptions. Both are required if we are to engage with families and family members in a manner that promotes mutual trust and collaboration (Hartrick Doane & Varcoe, 2005; Nelson & Nelson, 1995). It is therefore most fortunate that the 19th Annual Canadian Bioethics Society Conference1 this year is devoted to the topic of the family. Our colleagues in Newfoundland have planned a wonderful event that promises to bring together enlightening plenary and concurrent sessions that can help us to promote more ethical practice with families.

I hope to see many of you there.

Paddy Rodney, RN, MSN, PhD

References:
1. St. John’s Newfoundland, June 18th-21st, 2008. http://www.easternhealth.ca/cbsc2008/
2. Hartrick Doane, G., & Varcoe, C. (2005). Family nursing as relational inquiry: Developing health promoting practice. Philadelphia, PA: Lippincott, Williams, & Wilkins.
3. Nelson, H.L., & Nelson, J.L. (1995). The patient in the family: An ethics of medicine and families. New York: Routledge.

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Patient - Centred Ethics: It's Time Now! - Sue MacRae

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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