Supportive Voice Vol. 10 No. 1 Winter 2004
by Ellen Geerling
Ms. Geerling is a writer who has collaborated with the coalition on several projects. She lives in St. Louis.
"My message to you is this: You can relax. Let God do the work. You just have to make sure you do not interfere."
—Sr. Patricia Talone, RSM, PhD, Vice President, Mission Services, Catholic Health Association
All health care organizations treat persons with life-threatening illnesses—individuals who may, ultimately, die within their care. Are we doing this well—or badly? One of the Catholic health care ministry’s core values is to focus upon healing even when curing is not possible. If patients suffer within our walls, or die in pain because their symptoms are not as well managed as they could be, is that in keeping with our mission and core values? What if we discovered that persons with life-threatening illness feared, not death itself, but rather the isolation and anxiety that come from a fragmented system or health care providers reluctant to discuss end-of-life issues?
If there were data and a creative program model clearly indicating that we could improve patient, family, and caregiver satisfaction, and enhance care for persons at the end of life—all while substantially reducing costs—what Catholic health care ministry would not want to implement such an effort?
CALL (Comprehensive, Adaptable, Life Affirming, Longitudinal) Care is such an effort: an innovative, mission-based program sponsored by Supportive Care of the Dying: A Coalition for Compassionate Care. It represents an initiative designed to serve those whose needs are not fully addressed by existing health care structures.(1)
Begun in 2001 and implemented over the course of 18 months, CALL Care examined the challenges of providing seamless care and coordinated services for those with life-threatening illnesses. Successfully implemented at 11 sites in a variety of care settings, the project identified gaps in service and created links between resources to better meet patients’ and families’ needs.
Most of all, CALL Cared demonstrated that Catholic health care providers can offer better care and services in incremental ways by creating partnerships and linkages and using existing resources and structures rather than building new "silos." Most of the 11 sites were successful in this, and, even though the funding period has ended, CALL Care efforts can and will continue formally in some settings. In other settings, CALL Care will evolve to become part of more comprehensive supportive care/end-of-life programs.
Now that, the CALL Care project has evolved beyond implementation and data collection, what is its status? What was learned that should be shared with others interested in providing this type of supportive care? CALL Care implementation sites report that CALL Care has wrought positive—and sometimes wonderfully unexpected—changes in their organizations and communities. This article is a postscript to the data report published in the Summer 2003 issue of Supportive Voice.(2)
In the fall of 2003, representatives from the CALL Care pilot sites came together in Portland, Oregon, with SCD: CCC staff to discuss their successes and the wisdom gleaned from the experience. Project site coordinators discussed what they have continued to learn as their supportive care programs have evolved beyond CALL Care. They also described future directions for their supportive care programs—programs that continually seek to find new ways to offer comfort and support to persons with life-threatening illness and their families.
Lessons Learned from Site to Site
Just as the CALL Care settings were diverse in terms of organizational type and community demographics, the lessons and value that emerged from the CALL Care experience at each site varied. Yet some themes emerged consistently from both the data gathered and the stories offered by patients and their families.
For example, organizations such as PeaceHealth, Eugene, Oregon, found that, with a preexisting support structure or model for supportive care in place, CALL Care was predisposed to succeed. Several of the organizations reported that CALL Care highlighted the importance of training health care providers to talk comfortably and frankly, early in the disease process, about end-of-life issues, and they observed that this is interrelated with health care utilization. One organization decided to focus upon wellness and nutrition in the early phases of the illness process, so that patients might enjoy their quality of life longer.
One of the deepest lessons learned through CALL Care seemed to be that, though symptoms are being managed well overall, caregivers may not be managing pain as well as they believe. The data uncovered a need to help patients manage pain so that they do not, as one patient noted, have to live in "fear of pain that I can’t live with." Patients want to "live until they die" and enjoy a high quality of life, even as they recognize that they may be at the end of life.
The Spiritual and Emotional Dimensions of Care
CALL Care organizations also voiced one consistent, strong theme: All agreed that emotional and spiritual support is an essential—and perhaps the primary—need for patients and their families in coping with life-threatening illness. The data indicated that people are anxious about being isolated; they fear falling through the cracks of a health care system that may treat symptoms but ignore their humanity; and they are often unable to discuss end-of-life concerns with health care providers who may be unwilling or reluctant to broach the subject. These concerns represent a unique and appropriate opportunity for Catholic health care providers whose ministry and mission is to reveal the healing and comforting presence of God.
In response, through a variety of creative efforts, the CALL Care sites attended carefully to creating a healing, loving, and "high-touch" environment. Several CALL Care organizations offer comforting community-based programs such as "No One Dies Alone,"(3) which offers companions and presence at the end of life. Through "Strings of Compassion," (4) professional harpists offer soothing music to patients and to families who are spending the last hours they will have with those patients.
CALL Care coordinators note that sometimes the smallest things, requiring minimal effort, can give great comfort. The "Handprint Project" offers families an opportunity to make a handprint of their loved one.(5) In the emergency department/trauma setting, this can be an especially meaningful symbol of "presence" for families who have had little or no time to say goodbye to a loved one who dies suddenly.
Some caregivers find ways to utilize already-existing resources or enhance ordinary hospital procedures with small, nonlabor-intensive gestures that can give great comfort. For example, when a patient dies and a body bag is sent to the unit, St. Joseph Mercy-Oakland of Pontiac, Michigan, attaches a blank sympathy card to the bag, so that all staff members on the unit can sign the card and deliver it to the family. St. Joseph also has, for all seven inpatient units, a bereavement "comfort cart." The comfort cart carries music, rosaries, copies of the Koran and Bible, and "love blankets"—quilts given to family members in memory of their loved one. Giving family members this memorial "love blanket" (which are sewn and donated by volunteers) is a comforting gesture. Children especially find comfort in the notion of bringing home "Daddy’s blankie."
In attending to patients’ and families’ emotional and spiritual needs, CALL Care organizations noted how important it is to create a loving, supportive, and homelike environment. This may be as simple as having a family room with a sofa bed, or working to create such healing/spiritual spaces as a "Bethany Room," a room where family members can spend time in quiet reflection.
CALL Care: Other Important Lessons
CALL Care organizations described a number of other important lessons learned, issues that emerged, and benefits experienced. In the paragraphs below, they describe these important issues and share their practical advice with others:
Partnerships and Networks Formed: In general, the participating organizations found that CALL Care helped them to better utilize (and even to form) coalitions and partnerships and to improve communication across the community about end-of-life care. Partners in such coalitions include the health care organization, physicians, parish nurses, community care providers, faith communities, social service agencies, medical societies, concerned citizens, and even local or national advocacy groups.
"We have seen changes and improvements in community nursing homes as a result of improved supportive care efforts enhanced by CALL Care. We built a coalition, participate collaboratively in training efforts with nursing homes, and some of them now even have a palliative care bed."
Skill Sets Enhanced: CALL Care helped health care organizations develop their skill sets in communicating about end-of-life issues. CALL Care’s data-collection effort identified the need, heightened awareness of the issues, and even led some facilities to develop formal training programs on communicating about end-of-life issues and discussing death. This has improved dialogue with patients. Skill sets were also improved in other clinical areas, such as pain management.
"Although CALL Care worked with a specific patient population, we increased our skills and are more systematically identifying patients with whom we should be initiating dialogue because our knowledge about timing is better and our comfort level has improved. We can now engage in conversation more effectively with physicians."
Heightened Awareness about Palliative Care: CALL Care has, more often than not, had a positive effect in raising organizational and broader community awareness about end-of-life issues and palliative care.
"Our organization conducted a survey with physicians to gauge awareness. 200 surveys were sent out and 47 returned. The physicians were asked: ‘Are you familiar with the comfort care team?’ 83% said YES. Of those physicians who used the services, 100% were satisfied with the care their patients received."
Improved Advance Care Planning: Organizations implementing CALL Care found that educational efforts have helped them increase the percentage of patients who have advance directives. One organization has even sought to educate attorneys to use the right language and make the instruments clinically correct as well as user-friendly. Along the same lines, one hospital noted that CALL Care helped it better organize and educate on tissue donation.
"Our community coalition has worked to provide advance care planning education and support in churches, businesses, and at the hospital. The coalition, by involving many different members, was able to achieve a remarkable feat. During an audit of hospital records for patients admitted during one week—they had achieved a 70% rate for the presence of advance directives."
Increased Patient and Physician Satisfaction: CALL Care has increased patient satisfaction with end-of-life services. One site noted that, of physicians utilizing the program, 100 percent were satisfied with services.
"The comfort care team has increased patient satisfaction with end-of-life services. Satisfaction in a variety of areas has gone up."
Cost Avoidance Data: Several organizations have solid data to demonstrate that CALL Care has helped them avoid significant costs. Some have saved as much as $505/day to $660/day. There is a cost difference between intensive life-prolonging care and palliative life-prolonging care.
"Demonstrating cost avoidance due to providing intensive palliative care is very important to program survival. Across all sites there was only a 7% utilization of intensive care for enrolled patients and only a 29% hospitalization rate. We do not have information about use of emergency services, but patient and provider examples would suggest that we impacted even this service utilization.
One Piece at a Time: All organizations advised "eating the elephant one piece at a time." Implementing a CALL Care effort should build on (or be done through) existing efforts, resources, and relationships, rather than by creating a new department or employing a "silo" approach. Most have succeeded at doing so creatively.
"We started with our greatest opportunity to demonstrate positive changes in quality of care as well as to produce cost avoidance data. Once we demonstrated our effectiveness, we were able to expand our program."
"Power of the Person": Some organizations found it valuable to have staff "champions," but others succeeded without key individuals. In one or two sites, the effort was driven forward solely on the sheer power of the belief and enthusiasm of the individual(s) involved. One noted that, "we had nothing and still did good things."
"You must have an atmosphere of love. That is so important in getting well and feeling well. They are very loving. I am not dying. I am living."
"Power of the Community": Many organizations discovered, to their delight, that their communities have valuable resources that can be mined and publicized. One organization in a rural area of mostly older individuals found that there was a community strength in the practice of neighbor helping neighbor. As such, they sought to build this strength to educate and inform residents.
"Our community has a lot—churches, neighbors, and people taking care of their own. CALL Care helped us establish relationships with churches and other agencies."
Organizational Support: CFOs and administrators are starting to recognize the need for and value of efforts such as CALL Care. They are not cutting supportive care. In fact, several are adding hospices.
"We had a multi-million dollar budget cut. The comfort care team was never considered for cuts. We are not about money, we are about the mission of Jesus Christ."
Getting the Good Word Out: How can health care providers promote the CALL Care story to help others? In addition to publicizing the cost avoidance data, we can demonstrate the return on investment, the benefits of reducing pain and suffering, and the mission aspects. We can link CALL Care to patient satisfaction. Information can be disseminated to motivate or steer boards and administrators. Information can be shared with foundations and philanthropic organizations when seeking development funds. In addition, CALL Care in general should be publicized at conferences and professional meetings of various disciplines.
"It is difficult to get on the agenda of busy organizations. Perhaps you have 10 minutes. The key is to provide your data and your story within that time and make sure you leave the group able to answer the question about what you want from them. Engage the heart and the head in understanding your story."
Collecting Data: A good rule of thumb for future data collection would be to try not to measure too many things at once. Remember that collecting data imposes a burden on patients and families. Data can be qualitative and includes stories. The tool itself can be therapeutic and can offer an opportunity to show support, compassion, and presence.
"The interview was wonderful. All they wanted was someone to listen. One specific time the patient expressed regret over life style and the pain it caused family. The interviewer was able to share that conversation with the spouse. The spouse had never heard about the regret and found the information very comforting."
CALL Care’s Strengths Revealed
Overall, what did CALL Care do well? CALL Care was extremely successful in identifying appropriate patients and referring them to services—services that they otherwise might not have been able to access. In addition, CALL Care facilitated referrals to hospice for many individuals who might otherwise not have been able to get into hospice. About 49 percent of those who died received hospice. However, just as important, 51 percent of CALL Care participants received services but did not select hospice. This may indicate the need for a more community-based approach to palliative care. The data also indicate that health care organizations seem to be doing well in managing symptoms over time, even though the illness is progressive.
One other stunning statistic demonstrates one of CALL Care’s most positive aspects: Over two-thirds of CALL Care participants never had to be admitted again to the hospital and, as a whole, critical care admissions for CALL Care participants were very low. Nearly 40 percent of CALL Care patients were able to die at home, which is where most of them say they want to die. Another 26 percent were able to die in their long-term care residence. Unnecessary hospitalizations were thus avoided, saving costs for the hospital and emotional trauma for the family.
Moving Forward
By demonstrating improved patient care; better access to services; and higher patient, family, and physician satisfaction, all while reducing costs and avoiding unnecessary hospitalizations, CALL Care has gotten the attention of leaders in the Catholic health care ministry.
In caring for persons at the end of life, do we want to do it well? As members of the Catholic health care ministry, it is our mission and ministry to provide loving, supportive, healing care, especially for those at the end of life. Those in our care ought not live their last days suffering in pain, struggling with barriers to access services, or dealing with isolation from lack of communication about their illness. CALL Care has proven itself as a cost-effective, innovative model offering respect of human dignity, comfort, and healing, even when cure is not possible.
"In the Scriptures, we see that where suffering is, God is—compassionate, challenging. That is the reason for Catholic health care—to be engaged in human suffering.
—Sr. Patricia Talone, RSM, PhD
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(1) This project was supported by a grant from the Robert Wood Johnson Foundation, with additional funding provided by the Coalition and individual project sites.
(2) An executive summary of the CALL Care report appeared in the Spring 2003 issue of Supportive Voice (vol. 9, no. 2). For further information, contact Sylvia.McSkimming. A full copy of the CALL Care report, together with the executive summary and video, is available for $15. Contact Carol Lieberman.
(3) See Supportive Voice, Summer 2002.
(4)See Supportive Voice, Spring 1998 and Fall 2002 ("Music Thanatology"), as well as the current issue.
(5) See Supportive Voice, Winter 2003.
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Thanks
Supportive Care of the Dying: A Coalition for Compassionate Care would like to thank the 11 CALL Care implementation sites for their courage and graciousness in serving as pilot sites for the project and for sharing their lessons learned. For further information, please contact Sylvia McSkimming, Executive Director, Supportive Care of the Dying: A Coalition for Compassionate Care, 4805 Glisan St., Room 2E07, Portland, OR 97213.