Feb. 21, 2014
Dear Disabilities Community:
Thank you for your open letter to the Respecting Choices® program posted on Dec. 20, 2013, and for the follow-up phone conversation with Diane Coleman and Cathy Ludlum on Feb. 5, 2014. I am pleased we had the opportunity to discuss your concerns about the Respecting Choices fact sheets regarding feeding tubes and mechanical breathing support. As we discussed, Respecting Choices is in complete agreement with you that both feeding tubes and breathing support provide great value to many persons with disabilities, and can improve and prolong life. For these patients, these medical interventions clearly should be encouraged.
The fact sheets you referenced in your open letter are not intended to assist healthy adults, individuals with minor medical problems or individuals with disabilities with advance care planning. They are designed to be used by trained facilitators during conversations with competent patients who have serious, progressive, life-limiting conditions and who may face these treatment decisions and die in the near future. When these fact sheets are used by skilled facilitators in the context of these conversations, they serve as helpful decision aids.
While these fact sheets are well designed for their intended purpose of helping people with advanced illness make informed decisions, we take it seriously any time concerns are raised about our program or materials. As you suggested, Respecting Choices is developing a work group to review the two documents and, as you know, we would like members of the disabilities community to be part of the work group. We welcome your constructive assistance in revising these fact sheets to avoid the impression that they are biased against certain interventions. By working together, we can enhance the fact sheets and help even more individuals as they make decisions about their future medical care.
In the meantime, we have communicated with the organizations that have licensed or purchased the two fact sheets reminding them of the importance of using these fact sheets only by a trained facilitator with the specific patient populations for which they are intended. These organizations are aware that the documents are under review and revisions will be forthcoming. We have also placed a notice on our website that the materials are under revision and not currently available for purchase.
Before we begin our joint effort to review the fact sheets, I would like to share additional background information with you to help you better understand how advance care planning (ACP) is approached and how the fact sheets are used in the Respecting Choices model.
At Respecting Choices, we have always believed that ACP is a process for planning for the medical care you do want, not just a tool to express your refusal of a treatment. I have personally worked with people with disabilities to create written care plans that have directly stated the desire to use both breathing support and nutritional support because these interventions have clear benefit to the individual. Such care plans help address decision-making when a medical crisis occurs and better assures that the individual will get the treatment they both deserve and want.
Advance care plans often change as a person’s condition changes. At one point in life, a person may want all forms of treatment available, including feeding tubes and mechanical breathing support. As their disease progresses, they may make different decisions. For this reason, we believe ACP should be done in stages. Respecting Choices promotes planning in three distinct stages we have named: First Steps®; Next Steps; and Last Steps® ACP.
First Steps ACP is basic planning focused on competent adults who have never planned and who have a serious illness OR are healthy but have now reached late middle age. The main goals of this planning are to legally appoint a surrogate decision-maker (e.g., a health care agent) and to consider when and if a serious, permanent injury to the brain might lead to a change in the goals of medical care. Next Steps ACP is for persons with serious, progressive, life-limiting conditions who are starting to experience serious complications that we know will continue to reoccur in the near future. These are individuals who have a significant chance of death in the next 2 years because of their progressing illness. The goal of this planning is not to limit attempts to treat. Rather it is to explore what to do when treatment has been provided; the outcome of such treatment is undesirable to this person; and the person would be unable to make his or her own decisions. Finally, Last Steps ACP is focused on individuals who we would not be surprised if they will die, even with the best medical care, in the next 12 months. For these individuals the goal of planning is to develop a specific care plan indicating both what they do want and what they don’t want based on the benefits and burdens of treatment, and to communicate these plans as medical orders using the POLST paradigm form. This would allow the plan to be communicated and recognized in transitions of care.
These stages of planning help us organize conversations about future care with the different patient groups and better prepare both surrogates and patient to make the best decision when the crisis occurs. Unfortunately, in many approaches to advance care planning, people are asked to make decisions about future health conditions they do not currently have and may never face. They are asked to make decisions about specific medical interventions without any real understanding, context or even discussion. Asking people to make decisions about specific interventions, like a feeding tube or breathing support, when there is no clear reason to do so leads to the undesirable outcomes you cite in your letter. We believe this undesirable outcome can be mostly avoided by planning in stages with individuals. We only ask them about treatments like breathing support and feeding tubes when that is appropriate to their stage and type of illness.
As I mentioned earlier, the fact sheets you referenced are designed for competent patients who have serious, progressive, life-limiting conditions and who may face these treatment decisions in the near future and have a high probably of dying despite the treatment provided. This is why the fact sheets are more precise about the potential benefits and burdens of the interventions for these individuals.
At Respecting Choices, we expect these fact sheets will be used with trained Respecting Choices ACP facilitators, most often during Next Steps and Last Steps conversations. These facilitators know what persons to give these fact sheets to and how to listen carefully to the values and goals of each individual so that an informed, individualized care plan can be created. These ACP facilitators are also taught how to consult with the patient’s physician so all the needed medical information can be conveyed and understood. It is often the case that in such individualized planning, other values or goals must be taken into consideration and a thoughtful, personal plan created that may include a trial of these specific interventions to attempt to achieve the patient’s goals.
Again, I thank you for expressing your concerns. Your letter and our conversation has helped us to see ways to improve the fact sheets and make it clearer that they are to be used by trained Respecting Choices ACP facilitators and are not intended to assist healthy adults or those with stable, but perhaps complicated medical conditions. We look forward to working collaboratively with you to achieve our shared goal—providing the medical care each individual would like to receive.
Bernard “Bud” Hammes, PhD
Medical Director, Respecting Choices
Gundersen Health System