Blue Cross Blue Shield of Montana
Advanced Illness Coordinated Care Program
Vice President of Public & Government Relations
"No one should have to die in pain. If someone is dying in pain, we should be ashamed of ourselves as a culture."
— Jennifer Elison, RN, EdD
The mission of Advanced Illness Coordinated Care (AICC) is:
The program is designed to promote hospice and offer services to Montana patients under the age of 65 who have advanced disease. The target patients are eighteen to twenty-four months away from death, they don’t meet hospice criteria, and they do need psychosocial support as they make decisions about living and dying. "If you remember that the main focus is to help someone die peacefully, you are working with the living as well as the dying. You provide support to the whole family, and it means so much," said Jennifer Elison, RN, EdD.
The program, sponsored by Blue Cross Blue Shield of Montana, is unique because a person doesn’t have to be a Blue Cross Blue Shield policyholder to participate. In fact, the client doesn’t even have to have insurance coverage. Blue Cross Blue Shield pays for the care.
The main component of AICC is psychosocial support for a client and his or her family. Following the model based on the work of Dan Tobin, MD, the program consists of six to nine visits or home visits, with many phone calls in between. The caregiver, or case manager, follows a well-prescribed outline. Each meeting has an agenda, but the person with the illness makes the decisions.
The first visit is an attempt to learn who the person is, or was, before the illness. How did the client fit into the world? Pain assessment, a medical history, a record of medications, a social and spiritual history, the patient’s decision-making abilities, and a Lichert scale to obtain a sense of their understanding of their illness, are all parts of a first visit. The case managers explore the patient’s ability to confront and express their fears. They assess where the patient is in regards to "CUP"- Do they believe they’re in a curative stage, are they uncertain, or are they accepting of palliative care? Have advance directives been discussed?
The second visit gives support to the primary person. The third and fourth visits cover legal, social, and practical issues such as disability benefits. There is an assessment of the well being of the caregiver, a family meeting, and advanced care planning. After each meeting the physician receives a summary of findings and the discussion.
The fifth meeting puts the palliative plan in place. It is thought of as the turning point visit, with anticipatory mourning. If the patient wants one, the DNR directive is signed.
The sixth visit is for finding peace, and the subsequent visits repeat what has been offered before. Elison says, "We go from active caring, to just sitting with someone quietly when they need it."
Continuity of care is a major element of AICC. The case managers work autonomously, but staff at Blue Cross Blue Shield of Montana support and promote the program. The only new hires for BCBSMT have been the twelve case managers who operate out of four of the largest communities in Montana (Helena, Billings, Great Falls, and Missoula).
In the spring of 2000, Blue Cross Blue Shield of Montana adopted a theme of "Higher Purpose" as part of their community service, dedicated to helping people with the greatest need. AICC was the first project undertaken as part of that initiative.
Then Executive Vice President, now CEO and President, Peter Babin heard Tobin speak at a Milliman and Robertson meeting in the spring of 2000. Babin was enthusiastic about what he heard and asked Chuck Butler, Vice President of Government & Public Relations, to get in touch with Tobin to explore the idea of adopting the AICC program for their "Higher Purpose."
Tobin spoke to the Board of Directors of the company at their annual meeting in August 2000. Soon afterward, the Board voted to provide the expenditure for the program. Training for case managers took place in November 2000, led by Tobin and participants from Missoula Demonstration Project. The program was launched in February 2001, with the support of some state physician groups and hospitals.
Case managers are responsible for the program, but they work closely with Blue Cross. Elison noted that every person she’s talked to at Blue Cross has been extraordinarily supportive, not only to the program, but to the agenda. "They’re walking the walk. There’s a group of volunteers there who get very personally involved. It’s nice to see this idea move from somewhere up in a boardroom, to an individual bringing lasagna to a patient. Caring is what it’s about."
Several champions at Blue Cross made the program go. Because of Babin’s interest in AICC, because of Butler’s personal understanding of the issues surrounding a painful death due to the death of his mother, because of Tracy Koder’s compassion and skills in organizing, the program had an initial boost and ongoing backing. Elison says, "They’ve responded from the heart. When you do that, great things can happen."
The program is too new for any data to have been gathered. Blue Cross Blue Shield has assured money to fund 120 people in the program. To date, Helena has enrolled nine, Billings is serving nine, Great Falls has enrolled seven, and Missoula is working with two. Tobin is conducting his own measurements of the program. He is tracking the number of visits given to each patient, diagnoses, hospitalizations at the end of life, number of patients who move into hospice programs, medical services patients receive in addition to counseling, and satisfaction levels of the family and patient.
A major part of this program is patient education about the peripheral issues of death and dying. The case managers provide information to families, patients, the provider community, as well as the greater community in Montana.
Formally, AICC is being introduced through presentations at social workers groups, nursing facilities, and to physicians. Word of mouth about the availability of this program seems to be most effective. One doctor said, "I work for the patient, so he can have anything the hell he wants. Besides, this is such a great program for him." Physician buy-in is a positive form of spreading the word.
Funding is being provided entirely by Blue Cross Blue Shield of Montana. Case manager services are contracted back through The Life Institute. The Board has put aside $150,000 to pay for six to nine visits for up to 120 patients.
Jennifer Elison would love to see this program offered to people over the age of 65 and see it expand to areas of the state where illness is not so easily treated.
Key Elements of Success
Measures of Program Success
"Culturally, we don’t even like to talk about death," observes Elison. "Kubler-Ross did us a tremendous favor by broaching the subject. A lot of groundwork needs to be done to yet encourage us to communicate about issues surrounding death and dying. We need communication on all fronts."
"Our needs are so great. We need to be aware of caregiver needs, bereavement needs, a family’s reaction to sudden loss. We need to learn respect for people who opt not to go this route."
"We need continued funding, support from the community, competent people to work. We have that across the state of Montana. We have good, kind, competent people, but there’s a lot of community education work to do."
In an Ideal World ...
"In an ideal world this program would be second nature. Peaceful dying—you have to prepare for it. We prepare for births—we need to prepare for death . . ."
This descriptive summary is based on an interview conducted by Susan Butler with Jennifer Elison, RN, EdD, and Chuck Butler, June 14, 2001.
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