Interview with Bill Colby
Bill Colby, author of Long Goodbye: The Deaths of Nancy Cruzan, (Trade paperback, Oct. 2003), is the lawyer who represented the family of Nancy Cruzan. The Cruzan case is the first so-called right-to-die case ever heard by the United States Supreme Court.
Bill has appeared on CNN with Wolf Blitzer, Good Morning America, MSNBC, Today, CBS This Morning, and similar programs, and has spoken across the country on the issues we face at the end of life. He is currently a Fellow at the Midwest Bioethics Center in Kansas City, one of the largest stand-alone bioethics think tanks in the country, and he taught recently at the University of Kansas School of Law.
Q: What lessons have we learned from Cruzan, and what lessons still are to be learned (especially in light of the Schiavo case?)
A: One of the important lessons I learned was how critical it is to designate someone to speak for you in situations when you cannot, and to talk with your loved ones about what you want for yourself, and what you don't want, at the end of your life. These conversations are of course very difficult-they are about how we live and how we die--but having them can really be a gift to your family and those who care about you.
The major difference between the Cruzan case and the Schiavo case is that, with Schiavo, the family is in dispute. The Cruzans were united as a family in their decision to withdraw Nancy's feeding tube. As I see the situation in Florida play out, I wonder-if the Schiavo's had had "the talk", might the difficulties they face now have been avoided? No family would ever want to have to face these battles in a courtroom, and judges would certainly prefer that families resolve their differences among themselves. Another interesting difference between Cruzan and Schiavo is that Florida has a law that Missouri does not. If a patient in Florida has not left clearly stated advance directives, the law specifies that the order of priority for decision-makers is 1) the spouse; 2) the adult child or children; 3) the parents.
Q: Are you surprised to see some of these issues being raised again in the media and in the courtrooms? And how could some of these situations have been avoided?
A: Roughly 460 people die in the state of Florida every day. A large percentage of these people die from some decision made by either a doctor or a family member about a medical treatment. And none of those deaths make the news, because that is how people die. The social compact that holds that decision-making together is based on an assumption that families and friends act out of love, that professionals act out of compassion, that life is valued, and that everyone involved is trying to make the best decision in a difficult situation. Such important decisions have little to do with the law, and if that social compact breaks down, new laws will not solve the problems caused by such a breakdown.
The laws applying to end-of-life decision making vary from state to state. And as the SUPPORT study showed, even clearly written directives, documents that comply fully with state law, still do not always work. The best way, both legally and practically, to ensure that your wishes are followed when you can no longer speak for yourself is to clearly designate a health care proxy. But that piece of paper is just the start-you must then talk with the person you've given that power to, about your views and values, and about stories like Nancy Cruzan. You also should talk with other family members, your doctor, spiritual adviser-anyone with an interest.
Q: What about the use of living wills?
A: I don't find that "living wills" are all that effective-others may disagree, but I think the proxy is more effective. It's very hard to anticipate all of the choices that one might have to face, and the living will forms can often be confusing in the abstract. Having a clearly designated proxy is the best protection; part of that process is having a conversation with that person about some possible scenarios and what you would or wouldn't want for yourself. Of course you want to choose someone who you will trust to be your advocate; most people know who that person is in their own lives.
Q: Recently the Florida legislature passed a law allowing the Governor to intervene in Terri Schiavo's care. Can you discuss what role legislators, at either the local or national level, could play in shaping policy around end-of-life care and decision making?
A: The Florida legislature had a real chance to help educate families in their state about the purposes of medical treatment and the importance of having these difficult discussions about health care choices. Instead they chose to react in a way that was not, in my opinion, reflective or helpful to their constituents by intervening in the case, a decision that I think will ultimately be found to be unconstitutional by the courts. Part of the reason the state exists is of course to protect vulnerable people, but there needs to be a greater understanding of the purpose of medical technology and the medical reality of this case, and the legislators are missing a great opportunity to help further that understanding. As terrible as cases like Schiavo and Cruzan are, however, the attention brought to them does hopefully encourage other families and professionals to discuss these important issues.
Q: In the abstract, it of course makes sense for all of us to "have the conversation," but as you know all too well, it is difficult to do in reality. What suggestions do you have for family members who want to open up these conversations with their parents, spouses, or anyone?
A: There is so much work to be done in encouraging people to take these steps, and there is no real "gold standard." The approaching holidays could be a good time to start, as families are often together. Perhaps a movie or a story in the news can help jumpstart the conversation; I'm sure that many people are talking informally with family and friends after following the Schiavo case. Human resources departments or personnel offices could go a long way in providing documents and encouraging employees to have these conversations with family and friends.
In the paperback edition of my book, Long Goodbye: The Deaths of Nancy Cruzan, I suggest using the book in a book club or other group setting. At the back of the book readers will now find general discussion questions about the case. These lead into more personal questions about one's own wishes in particular scenarios (ie, "what would you want done if you were in a PVS like Nancy Cruzan", or "your neighbor has Alzheimer's and his son has decided to place him in a nursing home because he cannot speak and has stopped eating; what decisions would you want your children to make for you if you had not discussed these issues ahead of time?") The book also has definitions of terms like "health care proxy" and "advance directives" and lists some organizations that people can turn to for forms and more information.
Q: What role can health care professionals play in helping people think about decision-making and end-of-life choices?
A: Hospice professionals face this challenge every day, don't they? And hospices have made some major steps in educating families and healthcare professionals about how to start these discussions earlier in the illness process. When the goals of treatment change, we have to look at the reality of the treatments and the technology. In Nancy Cruzan's case, her parents consented 24 days after her accident to have the feeding tube inserted; at that time, it represented some hope, a possible bridge to recovery. As her condition persisted, the uses and goals of that technology changed; a treatment was tried, and that treatment failed.
The goals of an intensive care unit are different than the goals of hospice care, and making those transitions can be profoundly difficult. Being armed with information doesn't necessarily make the decisions less difficult, but not having the information can truly compound the emotional burdens that a family faces in these situations.
Q: HFA will be focusing on Alzheimer's disease in its upcoming "Living With Grief" teleconference. Are there issues specific to this disease in terms of artificial nutrition and hydration or other life-prolonging medical treatments?
A: As the Alzheimer's population increases, I think that all of us will be facing new and challenging issues about the purposes of medical technology--these questions will come up again and again as more people deal with Alzheimer's and other dementias. In end-stage Alzheimer's, the question of how the technology is being used is a critical question. To me, and for me, because my wife is my proxy and we have had this exact conversation-if I am demented to the point that I can no longer recognize my loved ones and no longer eat, with no hope of recovery, and a feeding tube cannot serve as a bridge to recovery, then I don't want that medical intervention, because, for me, it serves no sensible purpose. With advancing dementia, families should certainly have the incentive to have "the talk" early on-such a talk is a gift to those you love.
People lose track of how limited the options become at the end of life. For the Cruzans, they were down to only two choices, and both choices that they had were bad ones; the accident took all good choices away for them. In a similar way, Alzheimer's disease takes away many of those choices, too. Yet if we could talk with him today, Joe Cruzan would say that at every step of their struggle, the decisions that they made, including the decision to remove Nancy's feeding tube, were life-affirming ones.
Q: Why do you think that the issue of artificial nutrition and hydration is so charged, even more so than other discussions of life-prolonging medical treatments?
A: Society really began debating this issue in earnest in the 1980's, partly as a result of the Cruzan case being in the news. The idea of feeding and nurturing is basic to us as humans-as parents, we feed our children so they will grow and develop. Yet what is lost in this discussion sometimes is the definition of "feeding". In most cases where feeding tubes are an issue, the patient has lost the ability to eat or even swallow. Does a medical tube full of an FDA-approved mixture of nutrients, surgically inserted into a person's stomach, really equal "feeding" in the societal definition of the term?
Q: In addition to the issues surrounding Alzheimer's that we discussed above, what other issues do you see us facing in the future around medical technology and end-of-life decision making?
A: That's the big question. With the sheer number of us Baby Boomers aging, and technology advancing daily, it's hard to even conceive today the kinds of questions we'll face, and how often we'll be talking about them. So it's good that we're starting the discussions now, because the issues will only get harder.
For more information:
Long Goodbye: The Deaths of Nancy Cruzan
The Midwest Bioethics Center has a workbook entitled "Caring Conversations" that answers questions and gives suggestions about starting these discussions.
Partnership for Caring has state-specific advance directive forms that can be downloaded in PDF format.
