Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

On Introducing Respecting Choices in an Australian Hospital

Melodie Heland, RN, MN

[Citation: Heland M. On Introducing Respecting Choices in an Australian Hospital. Innovations in End-of-Life Care. 2003;5(3):www.edc.org/lastacts]

As a critical care nurse for many years, at times I have felt despair about the "technological imperative" of adding another machine or drug, because it was available and may do something of benefit for the patient. Often, it seems to me that we work in a void, not giving regard to a patient’s or family’s opinions or wishes about treatment. The result is that we continue to treat, because that is what we know how to do, and because being active is what keeps us comfortable as health professionals.

In 2002, I completed a master’s of nursing thesis, for which I researched other nurses’ experience of futile treatment.¹ Their experiences resonated with mine, and I discovered that my colleagues had deep feelings about end-of-life treatment. They found it challenging to deal with an imminent death in which the invasion of technology prevented a "good death." For these nurses, a "good death" was not fostered if the family was excluded, more tests were done, additional machines were introduced, and vasoactive drug doses were escalated. Eventually, when a decision was made to withdraw treatment, these nurses described the challenge of being left to turn down the drugs and remove the machines and tubes on their own. When asked what might improve these circumstances, they related how it would be so much better if we knew what patients wanted before they became ill. They questioned whether anyone really spoke to these patients about the progression of their disease and their preferences about treatment.

At the same time, the issue of life-sustaining treatment was a topic of discussion within our hospital and a small group of us started looking at what we could do to improve the current policy. The Respecting Choices^® program came to our attention through mention in a journal article. We contacted the program director, Bud Hammes, PhD, at Gundersen Medical Center in La Crosse, Wisconsin and began collaboration with him. From my perspective, the idea of an integrated, community program of advance care planning (ACP) was a potential solution to the often-overwhelming issues surrounding decision making about life-sustaining treatments. ACP results in a patient-initiated plan, and encourages decision making ahead of time, not during a crisis. ACP also encompasses family discussion and does not shy away from such "hard" topics as talking about dying and death, which health care professionals often avoid for fear of scaring someone or making people feel uncomfortable.

This has been an exciting time for our hospital, Austin Health, in Melbourne, Australia. In August 2002, Bud Hammes and Linda Briggs, RN, MSN, MA visited Melbourne and taught our staff the ACP course. I was the project officer responsible for introducing ACP into Austin Health. To date, we have conducted three of our own courses and have been buoyed by the amount of support for the program. The intense level of interest in the courses, both within and outside our institution, is indicative of the great need for a framework which assists health professionals, patients, and families to broach often difficult subjects, and make and record their decisions about what patients would want in the future, when they are no longer able to articulate their wishes themselves.

The Challenges of ACP Training

Part of the challenge for us in conducting the Respecting Choices training program, was to ground it in the Australian context. The feedback we received was overwhelmingly positive, but people requested role plays and scenarios that were more relevant to their practice. Advance care planning and advance directives are virtually unknown in Australia, so we rewrote the role plays and problem solving scenarios, taking the attitude that the person we approached knew little about the topic we were introducing. We also rewrote the slide presentation, including the legal context of our State and adding a module on guidelines for ACP in different cultural contexts, with three role plays demonstrating the challenges that may be encountered with different cultures. These changes have been well received and enjoyed by subsequent course participants.

A number of challenges have arisen since the ACP program was introduced. Misinformation and misunderstanding about the program’s intent has resulted in some people being put offside. To address this we have spent a lot of time following up on issues and speaking to individuals and groups of staff. Our impression is that, once people really understand what the program offers, and see it in action, they are more supportive. Some medical staff had concerns about patients asking for treatments that were unrealistic, i.e., they feared that opening a conversation about patient wishes would create greater obligations on their part. This concern was dispelled by a discussion of the goal of ACP being to understand and elicit patients’ wishes as well as to provide patients and family members with real data about the utility and success of various treatment options, using the health care professionals’ best judgment. The program does not advocate patient unilateral decision making, but serves as a bridge to negotiated decision making and improved understanding about options and choices for treatment, and likely outcomes of those treatments. In situations in which a patient is demanding a treatment that, in their professional judgement, promises unrealistic or futile outcomes, health care professionals have no obligation to provide it.

One further challenge was the personally confronting nature of advance care planning for staff. Many people find it difficult to actually broach this subject with patients. It is apparent that each person who undertakes the training has to find his or her own level of comfort and the "right" patient before they undertake a first ACP discussion. However, many staff members report that once they have crossed that bridge, they find it a lot easier to have the next conversation. We also discovered that staff need a referral and support system in place to ensure they can seek guidance when they are uncertain about legal or procedural aspects of ACP.

Changes Observed after Introducing ACP

What has changed by introducing advance care planning in our setting? I believe we are seeing a paradigm shift in how patients are approached by those who understand what ACP has to offer. Those staff members are taking more time to listen to what patients want, and are putting more effort into including patient preferences in the decision-making process. This change is heartening to observe in an environment in which patient preferences for treatment have been traditionally devalued. I feel very strongly about the ethical need to respect the dignity of other people. For me, this includes listening to their thoughts and feelings. Here is a vignette from some recent advance care planning I've done that illustrates some of the benefits of doing this work that can come to patients, families, and staff.

"Greg" is 28 years old and has a degenerative muscular disease. He requires overnight ventilation and was recently admitted to the hospital after a cardio-respiratory arrest subsequent to a chest infection. Some people involved in his care made their own judgement about whether Greg should have been resuscitated, but no one really knew what Greg wanted regarding the extent of future treatment. I was asked to undertake some advance care planning with Greg. His mother, his employed caregiver, and his social worker were involved in the discussion. The social worker and I spoke frankly about Greg’s illness and the possibilities for the future. We explained the process of ACP and worked with Greg, his mother, and caregiver to complete a Patient Advance Request document. As a result, they were reassured that Greg’s wishes were known and documented in his file, and that he had nominated a person to represent him when his condition deteriorated. The nursing, social work, and speech pathology team were relieved to have clarity around Greg’s treatment plan. There were no gaps or guesses.

This case illustrates many of the points of value that I see in having an ACP program:

• The patient and family were involved in decision making;
• Even though the patient was in an incredibly vulnerable situation, he was in control of what happened to him;
• The health care team worked together to come up with a plan;
• There is no deceit or veneer about what health care professionals are doing. It does not seem hard to assist patients in this way because it feels intuitively "right";
• Having a clear direction gives health professionals more satisfaction, and the environment seems less frustrating to work in.

For me, the introduction of the Respecting Choices program has been rewarding and revealing about how much better we can communicate with patients and with our colleagues. Advance care planning offers us the opportunity to truly respect autonomy, and to provide care consistent with how that concept is defined by the patient and family.

Reference:

1. Heland M. "Nurses' Perceptions and Experiences of Medical Futility in Adult Intensive Care Units." Master's thesis, RMIT University, 2002. [Return to Personal Reflections]