Update on Respecting Choices
Four Years On
Bernard J. Hammes, PhD
Gundersen Lutheran Medical Foundation
[Citation: Hammes, BJ. Update on Respecting Choices four years on. Innovations in End-of-Life Care.
2003;5(2): www.edc.org/lastacts]
Since the La Crosse advance care planning program was spotlighted in Innovations in January of
1999,1 there has been an ongoing effort to understand why the La Crosse advance care planning
program has been successful. This analysis has led to both refinements and developments of the
program. This essay will discuss the progress over the past four years to understand why the La
Crosse program works and how it has evolved. The ultimate question is “Can the documented2
success of the advance care planning program in La Crosse be transferred to other health care
settings in other communities?”
Why Has the Approach in La Crosse Been Successful?
In a review of advance care planning, Thomas Prendergast listed six elements that distinguished the
advance care planning program in La Crosse from other efforts.3 These six are:
•
•
•
•
•
•
Treats advance care planning as an ongoing process, not as an event designed to produce a
product;
Shifts the focus on end-of-life decision-making away from the completion of the document
toward facilitating discussion about values and preferences;
Shifts the locus of advance care planning away from hospitals and physicians into the
community and specifically to the family unit;
Does not assume that the physician is crucial to the process but promotes extensive training
of non-physician community volunteers;
Refocuses discussion of preferences away from autonomy toward personal relationships.
Rather than ask a patient what he or she wants, they reframe the question as, “How can you
guide your loved ones to make the best decisions for you?”
Works with hospitals and area physician offices to ensure that completed advance directives
are available in patient’s charts.
Dr. Prendergast concludes, “[The La Crosse approach]…fundamentally changed the standard
medical approach to advance care planning while addressing some of the more perceptive criticisms
of advance directives.” 4
Although Prendergast’s analysis is observant, as one of the key architects of this program I have two
important comments. The first is about the fourth element. The La Crosse advance care planning
program does consider physicians to be crucial, but has learned that non-physicians can facilitate
advance care planning in many cases. These non-physicians include: nurses, social workers,
physician assistants, nurse practitioners, chaplains, clergy, and volunteers with professional
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backgrounds. The real lesson here is to make sure that each and every adult gets the opportunity to
engage in advance care planning, not who does it. In La Crosse we have found that a team
approach is far more successful than placing the responsibility on only one professional group.
The second comment concerns what Prendergast implies about the type of change that has occurred
in La Crosse without specifically describing it. To fully appreciate this change, we need to return for
a moment to the outcomes of the well-known, end-of-life SUPPORT study. In the SUPPORT
study the assumption was that end-of-life care could be improved by providing more and better
information to the treating physicians. This assumption did not hold up. As is well known, the
subjects in the intervention group in SUPPORT did not get better end-of-life care than either
subjects in the control group or at baseline.5
In reflecting on this outcome one of the principal investigators, Joanne Lynn, concludes:
“…we contend here that the course of care may be determined largely by preexisting routine, that
patient-centered decision-making is often difficult to implement, and that improving the experience
of patients might be best achieved by changing institutional and professional routines.” 6
As a community-wide project led by the two major health systems in La Crosse, the Respecting
Choices® program has accomplished exactly what Dr. Lynn calls for, i.e., “changing institutional and
professional routines.” In this case, new routines were designed to promote and to respect advance
care planning. The effort in La Crosse, then, was to develop a system of advance care planning so
certain routines and practices would become the standard of care. As the program has evolved,
these routines have become characterized by “The Five Promises.” In this new routine, each health
system promises to do the following:
1.
2.
3.
4.
5.
Initiate advance care planning for each patient long before a medical crisis occurs;
Skillfully assist each willing patient with an individualized planning process;
Assure that any plans created are clear and complete;
Have plans available to the health professionals who may participate in decision-making
when the patient is incapacitated;
Follow plans appropriately, and respect the values and preferences of the patient as
allowed by law and organizational policy.
In La Crosse, these Five Promises have been embedded into the routine of care. When any one of
these Five Promises is not kept, staff members view the outcome as a failure. So what was implied,
but not stated in Dr. Prendergast’s six points is that a system or routine of practice was established
in La Crosse to make sure that advance care planning was undertaken and that plans were respected.
This aspect of the La Crosse advance care planning program has raised the bar. Meeting the
regulatory and accrediting standards is one sign of success, but these outcomes do not ensure that
patient and family needs are met. The La Crosse program has developed an assessment tool, based
on the concept of the Five Promises (Appendix 1), which helps organizations assess how well they
are helping patients with advance care planning.
I believe that the La Crosse approach to create and continuously improve an effective system for
advance care planning7 is distinct from other efforts to improve the use of advance directives,
advance care planning, or end-of-life decision making. Other efforts include more focused work to
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improve the written advance directive document,* to provide better advance care planning
discussion guides and assistance to consumers,† to provide a central place to store and retrieve
advance directive documents,‡ or focus on how to assist patients with end-stage diseases to make
better decisions about medical care.§ Whereas all these efforts are important, and all are part of the
advance care planning program in La Crosse, we believe that each, alone, will result in limited
success. A comprehensive system or program is crucial. Essential to establishing a successful system
are the following:
•
•
•
Embed the advance care planning system in the larger routine in which all health
professionals participate so they can effectively communicate or work together in a
collaborative fashion to keep all five promises;
Create ongoing monitoring mechanisms to make changes or improvements, i.e., include
feedback loops that characterize continuous quality improvement efforts;
Sustain the program over the long haul by recruiting institutional financial support and by
conducting ongoing staff training.
Developments of the La Crosse Approach to Advance Care Planning
Conceived of in 1991 and first implemented in 1993, the La Crosse advance care planning program
is still going strong. There have been both small and big developments. For example, the program
now operates under two names. The patient/community educational materials are now called
Making Choices® while the professional and organizational training materials and courses are called
Respecting Choices. The La Crosse program has adopted the Oregon innovation, Physician Orders for
Life-Sustaining Treatment (POLST),** as a way to enhance and standardize (make routine) respect
for patient values in the out-of-hospital setting.
To improve the impact of advance care planning on decisions in the months before death we are
engaged in an effort both to broaden the conversation and to focus the conversation using the
Respecting Choices approach. One goal has been to open conversations to explore palliative care
options more fully and in a timely way. These conversations, which we refer to as “Living Well”,
aim to provide a way for patients with metastatic cancer to consider their broader life goals and
meaning.8,†† ,9 There has also been development of more focused, planning discussions with adults
with end-stage congestive heart failure, end-stage renal disease, and other chronic illnesses, as
described by Linda Briggs in the Featured Innovation of this issue of Innovations. What has become
clear is that without further skill development and training, most health professionals do not know
how to have these more focused discussions. It is also clear that without a well-developed routine
and system, any plans that may be developed often have little or no impact on either current or
future decisions.
The big question, of course, is whether the La Crosse approach to advance care planning could be
successfully implemented in other places. Because La Crosse has a very stable, homogeneous
Five Wishes at <www.agingwithdignity.org/5wishes.html>.
Caring Conversations at <www.midbio.org/mbc-cc.htm>.
‡ MedicAlert at <www.medicalert.org/cms/channels/medicalerthome/services/acp/default.html>.
§ Advance Illness Coordinated Care at <http://www.coordinatedcare.net>.
** See the Center for Ethics in Health Care at Oregon Health & Science University for more on the POLST at
<www.ohsu.edu/ethics/polst.htm>.
†† <www.eperc.mcw.edu/educate/flash/fastfact/315.htm>.
*
†
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population and has significant cooperation between the competing health facilities, it has been easy
to wonder if La Crosse is more like the fabled Lake Wobegon than the rest of the United States.‡‡
The first step in answering this question was to develop the capability to train individuals and teams
from other organizations and communities to implement their own programs based on the central
ideas of Respecting Choices. In mid-1999, the Board of the Gundersen Lutheran Medical Foundation
in La Crosse authorized the use of resources to hire staff and to develop materials for this purpose.
Since that time we have trained teams from more than 25 organizations or communities in the
United States and Australia. Several teams report on their efforts in this issue of Innovations and in
the following issue.§§ Participants describe developing a fresh vision of advance care planning and
leaving the training workshops with the new tools and ideas needed to implement more effective
advance care planning programs and systems in their own organizations or communities.
Overcoming Barriers to Implementation
There have been several obstacles to implementing a Respecting Choices’ style of program in other
communities. One obstacle is the time needed to train health professionals. This obstacle includes
both the intense training of advance care planning facilitators and the training of other employees at
a health care organization. The facilitator training is a 14-hour course that teaches the language,
knowledge, and skills needed to facilitate planning and to help make the whole system work
effectively. Many organizations, with tight budgets and limited staff, have had difficulty committing
to such an extensive training program.
Many efforts have been made to reduce the number of hours of in-class training. Currently, there is
a plan to shift about half the content of the facilitator course to an online format. Efforts to shorten
the training, however, have not been successful. It is clear that it is not easy to learn the skill of
advance care planning facilitation. These are multifaceted conversations. Facilitators are faced with
complex emotional and knowledge issues. Despite the 14 hours of training, most participants still
do not feel fully prepared and clearly must have opportunities to practice advance care planning
facilitation in 10-15 more conversations before they feel some type of mastery. One of the most
important, but time-consuming elements of the facilitator’s training is role-playing. It seems to be
an essential learning strategy to acquiring the skills of advance care planning (Appendix 2).
The second obstacle is making the system changes that are necessary for a whole program of
advance care planning to become the routine of care. This work includes changing both practice
and culture—an endeavor that takes sustained commitment, leadership, and vision. It also requires
years of work.
A third obstacle is the cost of implementing the extensive system. There are real costs associated
with changing and maintaining the system. In these times of tight budgets and competing priorities,
it is easy for administrators and managers to put improving end-of-life care on the back burner.
‡‡ Radio Personality and author Garrison Keillor from Anoka, Minnesota has been spinning stories about this
mythical Midwestern rural community for more than twenty years on his radio show “A Prairie Home
Companion” broadcast on most US public radio stations. See <http://phc.mpr.org/> for its homepage.
§§ “Continuing the Conversation about Advance Care Planning: Part 1,” Innovations in End-of-Life Care, Vol. 5,
No. 2 and “Continuing the Conversation about Advance Care Planning: Part 2,” Innovations in End-of-Life Care,
Vol. 5, No.3, respectively.
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The fourth obstacle is transferring this approach to more culturally diverse regions of the United
States. There is evidence that the use of standard advance directives is most acceptable to older,
educated, white adults.10,11 This research conceptualizes advance directives as focused on
autonomous decisions to forgo treatment expressed in statutory documents. The Respecting Choices
approach, however, is not focused on the value of autonomy, on forgoing treatment, or on the need
for a specific document. The focus of Respecting Choices is on helping persons, in the context of their
relationships, to explore and to discuss what it would mean to care about each other if a lifechanging medical problem occurred. Since this model starts with the relationships that already exist,
and attempts to explore what it means when one member in the relationship has a serious, lifealtering medical condition, there is no reason that such a discussion could not assist in formulating
some type of clear plan in any culture. Thus far, no participant in a Respecting Choices training has
reported insurmountable obstacles to using this approach with people from diverse cultures.
Although it still has not been fully demonstrated that the La Crosse approach to advance care
planning can be successful elsewhere, health care professionals from all over the United States and
Australia, who have taken the time to study the program, can see how it could work in their own
community and organization. A few communities seem to be succeeding in achieving this goal.
Additional, pilot research on the Respecting Choices facilitation process has confirmed that this
approach can achieve important, short-term outcomes.12, *** Additional research is needed and some
of it is expected to begin in 2003 to look at more long-term outcomes. We will learn more from our
partner communities over the next year or two if the Respecting Choices approach can be successfully
adapted.
In conclusion, it does appear that this approach to advance care planning can be successful if it is
seen as being of value for patients and those close to them, and to the health professionals who
provide their care. The most intractable obstacles are the lack of dedicated resources and the lack of
commitment to changing health care routines. These are big obstacles, but not insurmountable
ones.
References:
1. Hammes BJ, Romer AL. Communication, truth-telling and advance care planning. An interview
with Bud Hammes. Innovations in End-of-Life Care. 1999; 1(1):
www2.edc.org/lastacts/archives/archivesJan99/featureinn.asp.
2. Hammes BJ and Rooney BL. Death and end-of-life planning in one Midwestern community.
Archives of Internal Medicine 1998;158:383-390.
3. Prendergast TJ. Advance care planning: Pitfalls, progress, promise. Critical Care Medicine
2001;29:N34-N39.
4. Prendergast TJ. 2001, p. N37.
5. The SUPPORT Investigators: A controlled trial to improve care for seriously ill hospitalized
patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of
Treatments (SUPPORT). Journal of the American Medical Association 1995;274:1591-1598.
6. Lynn J, Arkes HR, Stevens M et al. Rethinking fundamental assumptions: SUPPORT’s
implications for future reform. Journal of the American Geriatric Society. 2000;48:S214-221.
Linda Briggs and colleagues KT Kirchhof, BJ Hammes, M Song and E. Colvin at Gundersen Lutheran
Medical Center conducted a pilot study on use of a patient-centered advance care planning interview. A paper
on their results is under review for publication.
***
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Innovations in End-of-Life Care, March-April 2003, Vol. 5, No. 2.
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7. Lynn J. Nolan K. Kabcenell A. Weissman D. Milne C. Berwick DM. End-of-Life Care Consensus
Panel. Reforming care for persons near the end of life: The promise of quality improvement. Annals
of Internal Medicine 2002;137:117-122.
8. Hammes BJ, Bottner W, Lapham C. Expanding frames…opening choices: Reconsidering
conversations about medical care when cure is not possible. Illness, Crisis, & Loss 1998;6:352-356.
9. Schwartz, CE, Lennes I, Hammes B, Lapham C, Bottner W, Ma Y. Honing an advance care
planning intervention using qualitative analysis: the living well interview. Social Science and Medicine
2002 (in press).
10. Hanson LC, Rodgman E. The use of living wills at the end of life: A national study. Archives of
Internal Medicine. 1996;156:1018-1022.
11. Colenda C, Jensen M, Foster J et al. Variables predicting the completion of an advance directive
by older adults. Annals of Long-Term Care. 1998;6:83-91.
12. Schwartz CE, Wheeler HB, Hammes B et al. Early intervention in planning end-of-life care with
ambulatory geriatric patients: Results of a pilot study. Archives of Internal Medicine. 2002;162:16111618.
© 2003 Education Development Center, Inc.
Innovations in End-of-Life Care, March-April 2003, Vol. 5, No. 2.
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