Interview with Dr. Richard Fife
Richard Fife, PhD, had been involved with VITAS Healthcare Corporation for the past 20 years. He organized and trained many ethics committees throughout the VITAS system and also serves as the chair of the VITAS Corporate Ethics Committee. In addition to serving as an ethics consultant for the 30 hospices operated by VITAS, he is in charge of the chaplaincy program, which employs over 150 chaplains, as well as the volunteer and bereavement programs for VITAS. Dr. Fife is a frequent lecturer on issues relating to ethics, bereavement, pastoral care and diversity. Dr. Fife organized and started the poverty and urban ministry community programs in Tampa and Daytona Beach, FL, which has been operating for over 20 years and for which he is an ordained minister.
Q: As the chair of the VITAS Corporate Ethics Committee, you have had in-depth involvement in ethics and end-of-life care. Can you give us some background into the history of hospice ethics committees?
A: Until recently ethics committees in hospices were relatively new. I began forming some of the first hospice ethics committees for VITAS around 1992. Before that time, most ethics committees that worked with hospice programs were hospital-based. Many hospices have since recognized the importance of having a separate committee that reflects and understands the hospice philosophy of care. Today a significant number of hospices have formed their own committees.
Q: What advice do you have for a hospice interested in starting an ethics committee?
A: I see the primary responsibility of an ethics committee to be education, for the committee, for the staff and for the community. At VITAS, we worked with a professional consulting group when we began forming our committees. Because of the size of our organization, we were able to focus extensive staff time and training on the process. For the past several years I have been training the VITAS ethics committees. Hospices now have the advantage of utilizing the Internet to find a wealth of resources for forming and training ethics committees. In addition, NHPCO has excellent guidelines on “Developing a Hospice Ethics Committee” that have been used by many hospices.
Q: How does an organization ensure that the committee receives continuing education and training to keep up with the changes in the medical and ethical fields?
A: An essential element for any hospice ethics committee is to have a “point person” within the organization to keep the committee members up-to-date on issues in the hospice field, in bioethics, and in the news that might have an impact on their decision-making process. For instance, just today [ed. February 22, 2005] the U.S. Supreme Court agreed to review the challenge to Oregon’s law on physician-assisted suicide. Within a few minutes of that announcement, information was e-mailed out from my office to all of the staff at VITAS, including to the members of the ethics committees. VITAS also has a corporate ethics committee that meets every few months, and we prepare extensive packets of information and materials for the members.
Q: As you stated above, the size of your organization allows you some advantages in forming and communicating with these committees. What advice would you have for smaller hospice organizations facing these issues?
A: Well, this certainly is more challenging in smaller hospices. A great place to begin is by talking about your organizational values, and how they are tied in to your mission. When you start by examining yourself, you always become a stronger organization. Ideally, these values then connect to practice, which helps give the framework for dealing with the ethical questions that arise.
Many communities have universities or other institutions that offer conferences or workshops in health care ethics and decision making. And again, the Internet can be a great resource for smaller hospices or hospices in more isolated areas, by offering both online courses as well as communication with other hospice professionals.
What you miss, of course, by using the Internet is the conversation and the sharing of ideas face-to-face, which I believe to be the most exciting and rewarding part of the ethics committee process. Each person may come to the table with a specific perspective, but every discussion opens up new options and ideas.
Q: What are some of the common issues that come before the ethics committees in VITAS?
A: What usually comes before the ethics committee is an ethical dilemma, which I would define as a conflict of values or ethical principles. Essentially, ethical dilemmas are a matter of legitimate differences of opinion among various people on a moral choice. Basically, most ethics committees would give credence to four or five bioethical principles:
- autonomy (the patient’s right to choose)
- beneficence (what is of the most benefit to the patient)
- nonmaleficence (do no harm)
- justice (treat like cases equal) and
- veracity (tell the truth).
If you hold these principles to be of great value, than the ethical dilemma arises when two or more of these principles are in conflict; and, you can understand the value on either side. For example, one may greatly value the principle of autonomy; but, what if the patient chooses to not take medication that the nurse knows will relieve the pain. The nurse values choice (autonomy) but is concerned about what is best for the patient (beneficence). What the ethics committee often finds is that the decision in this case is not as evident as it appears. Or, the patient may want to know his or her true prognosis, but the family warns that telling the patient the truth will hasten the person’s death. Now you have conflicts with autonomy, nonmaleficence and veracity, for starters.
However, an important role that these committees play, especially for staff, is that they allow staff a place to bring issues that may not be willingly addressed by other members of the organization. Many are not pure ethical dilemmas. A number of them are ultimately about communication. For instance, we had a situation where I learned that a couple of nurses were conflicted with what they perceived to be the orders of a physician for a patient in the inpatient unit. I encouraged them to bring their concerns before the ethics committee. Once the discussions were begun with the committee and physician, we were able to determine the real conflict and resolve a breakdown in communications; which, in turn, headed off the possible loss of staff in this situation.
Q: Who should serve on a hospice ethics committee?
A: The committee should represent the disciplines that make up the hospice interdisciplinary team--a chaplain, a doctor, a social worker, a nurse or nurses aide. I also like to invite two or three members from the community outside of hospice--that helps to keep us honest and keeps us looking at the bigger picture. We have found in recent years that a nursing home representative has added an important perspective to many of our committees.
We don’t impose “term limits” or other limitations on how long the members can stay on the committee. The healthcare field still has enough turnover that some change is inevitable. And I have found that as ethics committees work together, they become a stronger moral community, so that longevity can be a real asset.
Q: You are based in Florida, so I’m sure that you have followed the events in the Schiavo case very carefully. Do these types of national stories about end-of-life care have an impact on hospice ethics committees around the country?
A: Very much so; there has been lots of discussion in all of our hospices nationally about advance directives and end-of-life decision making in light of the Schiavo case. It has been very strange to me that this has all happened in Florida, as our state has always been a key player in the issue of patient’s rights. In addition, Florida law is actually very clear that in cases such as these, the spouse has the right to make health care decisions. This has been affirmed again and again by the courts in this case and others.
While I think the involvement of the legislature and the amount of state resources spent on this case has been excessive, the positive aspect has been that many more families are having important conversations about end-of-life choices and wishes. One of our medical directors in Philadelphia flew to Florida specifically to insure that her grandmother’s advance directives were clear and specific.
There was much hope that the passage of the Patient Self-Determination Act in the early 90s would lead to more people filling out clear advance directives, but we have not seen the spike that we had hoped for. The act only encourages that the information is given out; it has not led to real discussions between doctors and patients. A more interesting impact has been seen in Oregon after the votes approving physician-assisted suicide. Rather than it being the “slippery slope” that many feared, statistics show that a small percentage of Oregonians have actually utilized the process, and that hospice use in Oregon has dramatically increased.
Q: What are some of the issues that hospices will be facing in the future?
A: Developing cultural and religious sensitivity is an ongoing issue within hospice care. The face of nursing home and hospice patients will change dramatically over the next few years, and hospice staff need training and resources to heighten their understanding of other cultures and religions. In VITAS we have regular inservices on these issues, and we have also established successful outreach programs in our communities. In Chicago, we hired a member of the community to work with local churches in African-American neighborhoods, and partnered with the Rainbow/PUSH Coalition. We started a similar program in South Florida with the Orthodox Jewish community.
Q: You have served as a hospice chaplain and ethicist for many years. What guidance do you give to families who are facing, or may someday face, these difficult end-of-life choices and decisions?
A: Conversations of this nature, whether large or small, are turning points on the journey. They can bring healing and a sense of control, even if they are painful or awkward. VITAS sees over 60,000 patients each year. We have learned that over 50% of these people have not been told that their illness is terminal when they enter hospice care with us. In hospice, professionals understand the deep need for patients and families to have these conversations, and can be so helpful in facilitating and encouraging them. The focus and the concerns are so different than in a hospital or other health care setting, so the conversations are different, too.
Many hospice professionals see hospice work as a mission or a crusade. So many people outside hospice say to me, “Your work must be so sad or depressing.” But I have seen through the years how hospice can really help get to the heart of these difficult dilemmas that we will all inevitably face, and allow us to focus on what is really important. You don’t abandon hope when you enter hospice; hope just takes on a different form.
