A10/B10: Improving the Service Experience of Cancer Patients and Their Families Leonard Berry, Ph.D. University Distinguished Professor of Marketing Regents Professor, Mays Business School, Texas A&M University Senior Fellow, Institute for Healthcare Improvement IHI Summit, March 21, 2016, Orlando, FL This presenter has nothing to disclose. 1 + Session Objectives - Understand the critical service shortcomings in adult cancer care and the need to improve these services - Discuss a variety of actionable ideas for improving service quality in cancer care - Better appreciate the complex, holistic nature of the needs of cancer patients and their family members 2 1
Chaplain A.J. Thomas Integris Cancer Institute Cancer is always a life-changing event Cancer care is a high-emotion service. 4 2
The Question How can we improve the service experience of adult cancer patients and their families as they make the journey from diagnosis onward? Looking for Answers The Wisconsin Study Studying the Literature Phase I Key Informant Interviews Phase II Site Visits An Ongoing Quest to Look for Answers 3
5 C s of Cancer Service Orchestrating Experience Clues Creating Community Partnerships Coordinating Cancer Services Enabling Connection Valuing Care Continuity COORDINATING CANCER SERVICES Pooling interdisciplinary knowledge to fulfill cancer patients clinical, psychosocial, spiritual and other needs and desires in a coherent, coordinated way. Clinical Coordination Someone needs to coordinate and that someone is often absent. Doctors don t talk to each other. You see a patient, then others treat him and the patient shows up again to you later and you don t have their records. physician, National Cancer Institute Most cancer care in communities is fragmented.... A cancer patient may see a surgeon, radiation and clinical oncologist separately. oncologist and program director private practice urologist specializing in cancer The biggest opportunity is concordance of treatment intent of all doctors treating the patient. oncologist and program director. 8 4
COORDINATING CANCER SERVICES Holistic Care Coordination In a 20- to 30-minute office visit you don t hear everything. At our weekly interdisciplinary meetings we learn more about what s going on with the patient s life that is creating more distress. I might choose a different therapy for a patient if I knew about... lack of transportation. Perhaps a medication that didn t require as many office visits. oncologist Cure isn t only about science. Oncology practice provides treatment, but that is a fraction of the patient s needs. Where we lack is holistic care: psychosocial, nutrition, sexuality. Treat the whole patient. oncologist oncology nurse leader cancer patient 9 COORDINATING CANCER SERVICES Multidisciplinary Clinic Day at Intermountain Healthcare Typically scheduled within a week of diagnosis. Patient and family stay in one room and care team individually come to them surgeon, medical and radiation oncologists, dietician, social worker, and nurse patient navigator. Potential Benefits Improves treatment plan. Minimizes confusion and uncoordinated care. Offers convenience of one appointment time for patient and family. Enhances patient and family satisfaction and loyalty. Patient leaves with written care plan which includes scheduled appointments. 10 5
COORDINATING CANCER SERVICES Cancer Medical Home at Integris Cancer Institute Full-service cancer center (with a fully-integrated proton beam facility) that also offers family medicine, cardiology, dermatology, rehabilitation, and other services. A lot of cancer patients coming here don t have a family doctor or they need to see a dermatologist for possible skin cancer or they need a cardiology visit. Cancer feeds these other practices and it is easier for care coordination. Integris Cancer Institute president 11 5 C s of Cancer Service Orchestrating Experience Clues Creating Community Partnerships Coordinating Cancer Services Enabling Connection Valuing Care Continuity 6
Orchestrating Experience Clues Managing the many clues or signals patients and families perceive as they experience the service to evoke positive feelings such as trust and hope. The more important, variable, complex, and personal the service, the more clue-sensitive customers are likely to be. THREE CATEGORIES OF CLUES Functional Mechanic Humanic + Clues emitted by the functionality of the good or service + Clues emitted by stimuli associated with things sights, smells, sounds, textures. + Clues emitted by stimuli associated with people choice of words, tone of voice, level of enthusiasm, appearance, body language. 7
Functional: Clues emitted by the functionality of the good or service. My first time I was in the chemo chair I was armed with what the nurse taught me. I remember feeling positive and strong.... Being prepared made it much better. cancer patient When you have cancer, you don t want to hear that We can get you in in two weeks. It is a powerful thing to say to patients that their treatment plan will be reviewed by multiple clinicians and their care will be coordinated. health system president oncologist Mechanic: Clues emitted by stimuli associated with things sights smells, sounds, textures. You can go through the building and you don t think there are 10 patients in it. But right now there are probably 100 patients in the facility. It was designed to create a sense of privacy. cancer center president The doctor draws everything on a piece of paper and gives it to me to take home. cancer patient We do a lot of little things. We put music (Spotify) in machine so patients hear music of their choice. At the end of the course of treatment, patients hit a gong to celebrate completion. oncologist and chair, radiation medicine 8
Humanic: Clues emitted by stimuli associated with people -- choice of words, tone of voice, level of enthusiasm, appearance, body language. I could barely stand up when I finished my 34th radiation treatment. My goal was to walk out of the room under my own power. The technician said to me I know these treatments are going to help you! That is exactly what I needed. You can t script kindness. And I walked out under my own power. cancer patient Patients are ultrasensitive to the doctor s words as clues to whether they will live or die. cancer patient Nurses look at the computer too much. It seems that the solution to everything is in the computer when sometimes holding your hand is what you need the most. cancer patient Nurse Nancy is very kind and sympathetic. She hugs me. She told me: Don t worry, the tumor is not so big.... She didn t use medical words; she uses easy words to understand. cancer patient THE POWER OF CLUES Functional Mechanic Humanic Mayo Clinic s use of ipads for assessing patients physical and emotional states Dr. Peter Eisenberg s never phrase Kaiser Permanente s embedded infusion pharmacy Monter Cancer Center s satellite blood draw lab in exam room area Monter Cancer Center s shame-free service culture for uninsured or financially stressed patients 9
DR. WOLLNER S CLUES I put my e-mail address on my card so patients and families can e-mail me if they need me. I also give them the nurse navigator s card with the e mail address. I make sure the patient knows there is a tumor board and I am going to be presenting their case. -- Dr. Ira Wollner Josephine Ford Cancer Institute Henry Ford Health System 19 I wear the heart as a symbol of compassion. I truly love my patients. I often give them hugs when I see them and say goodbye. Dr. David Gullion, medical oncologist, Marin Cancer Care 10
5 C s of Cancer Service Orchestrating Experience Clues Creating Community Partnerships Coordinating Cancer Services Enabling Connection Valuing Care Continuity ENABLING CONNECTION Enhancing patients and families sense of control by enabling them to connect with the assistance they need when they need it. Oncologist It is really difficult when you are on call and patients call in the middle of the night. How sick are they? It is easiest to say, Go to the ER. The Patient s Father You can t get sick during the weekend. No one is around. Husband of Cancer Patient I would use my magic wand to be able to talk to the doctor when I needed to. Being able to say, This is going on, this is happening, should I be alarmed? Cancer Patient I had to go to the ER on a weekend three weeks ago. I had a high fever and couldn t reach the doctor. 22 11
ENABLING CONNECTION Proactive Connection Bellin Health s Cancer Coaches Henry Ford s pharmacy calls once or twice a week to patients taking oral chemo. Reactive Connection Hospice of the Valley s Off-Hours Call Center Mayo Arizona s Supportive Care Infusion Center WHAT IF your health system prevented one ER visit and one hospitalization per cancer patient per year? 23 5 C s of Cancer Service Orchestrating Experience Clues Creating Community Partnerships Coordinating Cancer Services Enabling Connection Valuing Care Continuity 12
VALUING CARE CONTINUITY Viewing cancer as a life-changing journey for patients and families requiring continuing care aligned with patient and family needs and desires. There is anxiety when therapy comes to an end and you are cut loose. I am 7 years out now and still anxious before a mammogram. No one prepared me for that. cancer patient Expert palliative home care teams could do so much good and not just at the end of life, but much earlier to help patients have the best possible quality of life. - palliative care physician Understanding the patient s support systems is as important a piece of the history as the medical part. oncologist and palliative care physician If people don t have the opportunity to die the way they want, the family is robbed of wonderful memories. When dad was near death he asked us to get a piece of paper and gave us numbers. They were for his golf club locker. He wanted us to give away his golf clubs. family member 25 VALUING CARE CONTINUITY Hospice of the Valley s interdisciplinary care model consisting of an RN case manager, social worker, physician, nursing assistant, chaplain, and volunteer. Bellin Health s cancer patient fitness program. Dr. David Debono s assessment of a patient s in-home environment and support system. Seton s survivorship navigation and clinic services. Dr. Tom Smith s standard protocol to have his oncology patients seen concurrently by a palliative care group to (as he tells patients) help you and your family. 26 13
5 C s of Cancer Service Orchestrating Experience Clues Creating Community Partnerships Coordinating Cancer Services Enabling Connection Valuing Care Continuity CREATING COMMUNITY PARTNERSHIPS Mobilizing community resources to help ease the path for patients and families impacted by a disease that is always life-changing and often life-ending. It is amazing to me the number of patients without a support system. I worry about those who have no one in their corner. oncology nurse leader We see a lot of inner-city patients who start treatment but don t finish. Transportation is an issue. Buses are unreliable and some don t have family to bring them. oncology nurse I had to leave my job to help my wife. All our savings went. I wish they could help a family struggling financially. husband of cancer patient People used to die in their home, with loved ones, with pets. They need to have their symptoms managed but do they need to be in a hospital. hospice nurse 14
CREATING COMMUNITY PARTNERSHIPS University of Maryland St. Joseph Medical Center s (and other health systems ) Survivors Offering Support program. Marin Cancer Care s partnership with the Bay Club fitness center where cancer patients receive a free 6-month membership and work with certified trainers. Integris Cancer Institute s partnership with the Francis Tuttle Cooking School to help newly diagnosed patients with meals, recipes, and shopping lists. Seton s Big Pink Bus Seton Breast Care Center 15
5 C s of Cancer Service Orchestrating Experience Clues Creating Community Partnerships Coordinating Cancer Services Enabling Connection Valuing Care Continuity Cancer touches us all sooner or later, directly or indirectly. What an opportunity we have to improve the journey that patients and families make. 16