How is RC different from other ACP efforts or programs?
Respecting Choices is a comprehensive ACP system that includes not only all stages of care planning but embeds these planning processes into the routine of healthcare and the norm for the people in the community. It includes four essential elements:
- Systems redesign
- Competency training of healthcare professionals and others including the creation of the ACP facilitator role
- Patient and community engagement
- Continuous quality improvement of the other three elements
Other efforts to improve ACP include engagement programs; paper, video and electronic decision-aids; and skills training programs that focus on one stage of planning. Some of these efforts are complementary to and can be used to support the RC approach. Some are fundamentally inconsistent in their design and approach or are simply designed to be used themselves and cannot be integrated into the RC model.
Does RC endorse or support any group or organization?
No. The Respecting Choices program does not endorse or support groups or organizations.
Does RC favor or support efforts to legalize physician assisted suicide?
No. Respecting Choices does not lobby or advocate for any legislation. The mission of RC is to help health organizations, professional societies and other groups build effective ACP systems so that patients and their families or loved ones can make the most informed, ethical decisions supported by medical science and permitted by law.
Why does RC support the use of non-physician ACP facilitators?
Respecting Choices believes that all patients and their families deserve accessible, highly quality ACP services. Experience and evidence have clearly led to the conclusion that physicians simply do not have the time to provide a service that typically can take 30 to 90 minutes depending on the patient and the stage of planning. Physicians are trying to address the needs of many patients and, clearly, treating the ill always needs to be a priority.
The physician does have a key role as a member of the ACP team. Advance care planning needs to be a team effort where ACP facilitators guide people through this complex conversation and call on the expertise of others, including physicians when needed.
Physicians also have an important role to initiate conversations, to motivate their patients to plan, to provide medical information as needed, to review plans over time so they stay up-to-date and become more specific as illness progresses and to use plans to make decisions when appropriate.
What is the relationship between RC and the POLST Paradigm?
There is no formal programmatic or organizational relationship between the Physician Orders for Life-Sustaining Treatment (POLST) paradigm program or Task Force and Respecting Choices (RC). Early on, RC saw that the POLST system was an effective way to communicate important medical decisions for patients in the last year of life. It is a system that allows any medical decisions to be expressed and clearly communicated from one setting to another.
Additionally, the POLST program provides for revision and reconsideration of these decisions as health conditions change and transition of care occurs. The POLST paradigm has also been strongly supported by research evidence and has been endorsed by both professional groups and through legislation in 22 states. It was the clear effectiveness and systematic nature of the POLST paradigm that made it so consistent with the evidence-based, systematic approach of Respecting Choices.
Respecting Choices brings an expanded component to the POLST program: an effective method to train health professionals to facilitate the conversation with patients and their surrogates to enhance the quality of decision making. It was to achieve that end that RC developed the Last Steps® Advance Care Planning (ACP) facilitator, instructor, and faculty training program. The facilitated process can be used with any system of communication or documentation. POLST is the one that is most well-known and best supported by the evidence.
Is it an aim of RC to lower healthcare cost?
No. The aim of RC is to help establish effective ACP systems so all individuals have the opportunity to plan for certain future medical situations and to have their values and goals respected if a time comes when the person can no longer speak for himself or herself.
Use of the RC model appears to be associated with a lower utilization of acute care services because most individuals who effectively plan are interested in defining the boundaries of treatment when burdens outweigh benefits.
How does RC address the fears raised by labels like 'Death Panels'?
There is no truth to the claims that suggested the federal government would attempt to ration care by making ACP a benefit for Medicare members.
The link that was made between rationing and ACP occurred because the original healthcare reform act proposed a requirement that health organizations report three things:
- The prevalence of advance directives
- If the documents had been captured in patient charts
- If the preferences of patients were correctly followed.
Some political leaders incorrectly linked these outcome measures as "pay for performance" and argued that the goal was to pay physicians to talk patients out of expensive medical care. This allegation was not true.
The goal of outcome measures is to hold healthcare organizations accountable to use advance directives correctly. There is no reason to make ACP a benefit if this activity does not actually help improve care for patients and families. Paying clinicians to have ACP discussions makes no sense if the prevalence did not increase, plans were not available, and plans were not honored.
Does the RC approach to ACP ration care or lead to earlier deaths?
No. Rationing care means an effective medical treatment will not be provided because the treatment has been determined too costly. In some countries this is a social decision sanctioned after political debate and decision making.
Respecting Choices is an approach to assist people and those close to them to consider when the goals of medical care should or should not shift because of changing evaluation of the benefits and burdens of treatment. Respecting Choices is focused on assisting individuals and their families to make informed decisions about their future healthcare.
Effective ACP can lead to lower healthcare cost as it becomes possible to avoid treatments that are neither wanted by the patient or effective in treating the patient. If cost saving is achieved in this manner, it is because the patient's values and views have determined that the burdens of some medical treatment is not worth the potential benefits.
The RC approach with patients does not lead to earlier deaths. In one randomized, controlled clinical trial where patients were either provided RC ACP facilitation or a standard of care with no ACP intervention, subjects who received the RC facilitation and those who did not lived the same length of life. However, the intervention group received significantly less ICU care.
In La Crosse County where RC has been the standard of care since 1993, the mean age of death has increased over the past 20 years and is similar to the mean age of death as other counties in Wisconsin were ACP is not as widespread.
According to the Dartmouth Atlas, the La Crosse health region uses a very low intensity of hospital services in the last two years of life compared to other places. So while La Crosse has done better than almost every other place in the country to control healthcare cost, our citizens enjoy the same or longer lengths of life as in other areas of the country.
How is RC related to palliative care?
Respecting Choices and palliative care have some overlapping features, but are distinct. Palliative care clearly focuses on making important decisions with patients about their care, especially those who have serious illnesses.
Respecting Choices also helps address these issues; however, RC addresses a broader range of ACP activities including planning at a time when people are healthy and are preparing for some unexpected, serious illness.
Because of its person-centered approach, fostering concurrent care and its team approach, RC does foster a palliative approach to all patient care and extends the benefits of palliative care to a much broader number of patients.
Is it dangerous to plan for future medical decisions when there are circumstances that cannot be anticipated?
Clearly, it is impossible and would be dangerous to plan for everything that might afflict a human being. Fortunately, it is not necessary to attempt such planning. When planning is conceived as something that can be done over time and in relationship to your health condition, it becomes possible to create a more realistic planning experience.
When adults are healthy or don't have a progressive, life-limiting condition, there are only two important future medical decisions that are needed:
- Selecting a well-qualified person—typically a trusted family member or friend—to make your health decisions when you cannot
- Determine when a serious, permanent neurological injury would be so bad that you would want to change the goals of your medical care.
With this approach to planning individuals can express a plan (e.g., who will make your decisions when you cannot and when a serious brain injury would be so bad that the goals of medical treatment should change). In making this plan the person can indicate what treatment might be forgone, but the actual decision would be made in the moment by the appointed healthcare agent.
This First Steps® plan needs to be reviewed and reconsidered over time, but people really do not have to plan for any other medical decisions until they have a serious condition that is getting worse, and/or they are suffering significant or more frequent complications.
At this point in time it is clear that more complications might be expected. Here, what we need to be prepared for is how to proceed when we treat the next complication and the outcome of that treatment is not good. When would an outcome be so bad that you might change the goals of care? Again such planning prepares the patient or the healthcare agent to actually make medical decisions in the moment.
Of course the answer for some individuals might be they "never" want the goals of treatment to change, but this is at least the type of circumstance where some bad outcomes would be viewed as low benefit and high burden for some individuals and this person may be too ill to communicate that assessment at the time needed.
Finally, when an individual has a short life expectancy and is getting worse despite treatments, people should have an opportunity to create a specific medical plan for if and when hospital services such as intensive care and mechanical breathing may be needed. These services will clearly be issues in the near future and might add little to such individuals' care—except prolong suffering.
What does the word "choices" in your name mean?
The word "choices" in the name Respecting Choices is sometimes mistakenly thought to promote an unlimited personal autonomy, (i.e., whatever the patients wants is ethically, medically and legally acceptable). This has never been the aim of the RC program. In the end, of course, choices must be made and they must be guided by ethical and medical thoughtfulness within social and legal boundaries.
The word "choices" is plural not because each individual makes numerous decisions, but because plans reflect values and thoughts of patients, their families and the healthcare professionals who care for them. In these relationships it is the goal that all "choices" need to be respected.
How it the RC approach to planning different than other approaches?
Many approaches to planning are created to assist in planning by providing more information and by asking basic, straightforward questions for the individual to answer about their values and priorities.
While good information is always needed, one can only make authentic decisions if one's values and goals are clear and thought out. The questions that are often provided in decisions aids assume that it is relatively straightforward for individuals to answer and know the answers to these questions. Often this is not true!
Respecting Choices views the planning process as more complex and challenging. What's important and has priority at some future time isn't a process most are familiar with nor is it easy to sort these values and priorities out. Taking this to heart, RC has created a process of planning that includes the following focuses:
- Identifying and exploring the fears, concerns and gaps in understanding of each patient and addressing them as identified.
- Exploring the patient's experiences of illness and medical decision making and considering lessons learned.
- Reflecting on the patient's values, goals and beliefs and considering the importance of each relative to the stage of illness that exists.
- Identifying patient questions that still need answers and developing a plan to obtain the needed information no matter if it is medical, religious/spiritual, legal and so forth.
- Providing a safe and open forum for discussion between the patient and those people who are close, (e.g., the family) so any issues can be fully and openly discussed.
- Helping articulate the plan in a clear and complete manner for any stage of illness so all involved, including the clinicians, can correctly understand and utilize the plans when and if needed.
Attending to all of these issues in the planning process is simply more comprehensive and better prepares patients as well as their selected surrogates to face the challenges of complex medical decision making.