Fifth Interview with Kenneth J. Doka, End-of-Life Ethics : A Case Study Approach

Q. You’ve served as Editor for numerous HFA’s publications. This newest book utilizes case studies to look at end-of-life ethics. Why was the decision made to utilize this particular approach?

A. Editors and writers agree that there are general principles that govern ethical decision making. But in “real life,” most people recognize that it’s not that simple. Utilizing a cast study approach, especially some of the cases that are challenging or difficult, grounds the book in the messy reality of end-of-life decision making.

Q. For professionals who might want to use the book in their own work, or as a teaching tool, what might they find in the book of particular value?

A. The cases in the book, all written and discussed by prominent professionals, really show “ethics in action.” Many of the cases demonstrate how families and professionals make decisions in less than pristine or ideal circumstances. For professionals, the cases may help to validate the difficult choices that they guide families through every day in hospice and palliative care, or in a hospital or nursing home setting.

The cases highlight real issues, looking at issues around communication, surrogacy, decision making when children or adolescents are involved, and treatment decisions.

Q. Traditionally, the exploration of ethics at the end of life has focused on “what would the patient want?” You mentioned the issue of “surrogacy”—what happens when the patient isn’t able to communicate what he or she wants?

A. The complexity of surrogacy—of who speaks for a patient when he or she is unable to do so-- is a thread that runs throughout the book.  It is critical to recognize that ethical decisions are contextual; decisions a patient may make at the end of life will very likely impact loved ones after the death, and may even have a lasting impact on the professionals involved in the case.  Historically so much attention has been placed on patient autonomy. While that principle is still a crucial component when looking at end-of-life ethics,   this model has neglected to recognize that these situations take place within a broader context. The book examines the newest models of thinking about ethical decision making at the end of life, especially in light of newer medical and social realities.

Many of the cases in the book illustrate how important it is to consider the situational context when determining surrogacy, or making decisions about care at the end of life. For many people, the person they choose as a surrogate decision maker is the person closest to them—a spouse or adult child. That person may not actually be the best person to “carry out your wishes” because of their own emotional attachments.  But not entrusting that person with that role could also have a significant impact on how they cope with the illness and loss. This newer model has a more communal focus—understanding how these people, and issues, may be intertwined.

Q. How does this contextual approach impact professionals?

A. In many ways hospice care has always recognized the importance of understanding the situational context of each patient and family. Hospice’s holistic, interdisciplinary approach to care helps ground decision making in a broader sense of everything that is going on. For professionals, recognizing this can inform not only how they guide and advise families about treatments and choices, but can also help with communication when there is conflict between family members, or a difference of opinion between the professional and the patient. Some of the cases in the book illustrate difficult situations in which patients and families have made decisions about end-of-life care that are different from those recommended by professionals, and look at the moral distress that some professionals may experience in these situations.

Q. In addition to looking toward new models, the book also includes discussions of landmark cases that shaped end-of-life ethics, both theoretically and legally—cases like those of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo. What role do those discussions play in looking at end-of-life decision making today?

A. Those cases are critical in looking at the cases in the book, not only because of their legal significance, but because they actually show how ethics has begun to move away from a pure sense of patient autonomy. The painful human reality that ties those cases together is that these decisions are not made in a vacuum and in clear, resolved circumstances. End-of-life decision making is messy and often comes down to making a choice between two not very positive outcomes.  But it can always be aided by a more sensitive, communicative process that recognizes the multiple layers of family and communal context involved in the process.

Q. HFA’s new book is published in conjunction with an educational program that will be available on DVD in April. The educational tools will be available to a wide range of professionals, perhaps with differing perspectives and opinions. What would you say is the overarching message?

A. The key message is the importance that must always be placed on good, effective communication. This communication must acknowledge the context in which these discussions are taking place, and the potential impact that the discussions and decisions will have on the patient, the family, and the professionals involved in the care.  Differences will always exist, but good communication can go a long way in bridging those gaps. The cases presented in the book, and that will also be on the program, are strong “real-life” tools to help open up dialogue and discussion.

The development of the book was itself an interesting and fascinating dialogue. With four editors, a managing editor, and near two dozen prominent authors, we had intense discussions amongst ourselves of the underlying ethical issues in each chapter. Such is the ever-evolving nature of ethics – if we all agreed, all the time, there would be no ethical dilemmas and no reason for an HFA Living with Grief® program or book.