Anesthesiologist and intensivist Silvia Perez-Protto, M.D., is leading the charge to standardize advance care planning processes in her institution. At Cleveland Clinic, she is director of the Center for End of Life Care and a faculty member at the Center for Excellence in Healthcare Communication. The center’s objective is to standardize advance care planning and align end-of-life care with specific goals that are aligned with the patient’s preferences.
Among the goals of this effort is to move patients who are eligible into hospice earlier in their disease trajectory, and to ensure that patients who can benefit from palliative care have access to it.
Studies show that advance care planning can reduce hospitalizations by as much as 26%, reduce health care costs, increase community-based palliative care and hospice utilization, as well as significantly increase the likelihood that care will be delivered in accordance with the patient’s wishes.
Originally from Uruguay, Perez-Protto currently practices at the Cleveland Clinic Surgical Intensive Care Unit. as well as teaching at the Cleveland Clinic’s Learner College of Medicine.
Perez-Protto spoke with Hospice News at the End Well conference in San Francisco.
You have been working to standardize advance care planning in your organization. In this context, how would you define standardization?
First of all, we have to define advance care planning. After reviewing the literature, we developed a very simple definition for the clinic to operationalize: Advanced care planning means for every adult to identify who would make decisions [should they become unable to communicate] helping them to complete advance directive documents We recommend that every adult have an advance directive or a surrogate identified in the medical record, and we then help the patients to have a conversation with that person using The Conversation Project. For seriously ill patients, advance care planning means to have a goals of care conversation with the patient or surrogate documented in the chart.
Can you walk me through your standardized process?
We chose the Ariadne Labs conversation guide for having discussions with seriously ill patients documenting goals of care in their charts in a place where everybody involved can read it, and we train our [clinician] caregivers to have the conversation.
We build all the blocks that we need to make sure this happens. For example, we found that patients that are seriously ill have a high readmission risk score. This score helps us to identify patients who are most likely to come back to the hospital in order to help them stay at home with extra support.
The second thing of course is to talk to the patient. The Ariadne Labs questions have basically four stages. We try to ascertain how much the patient understands about their condition. We determine how much information they want to know and then share prognosis, explore the patient’s wishes, identify the patient’s worries and then develop a collaborative plan with the patient using shared decision making.
We then build a document, placing a beacon in the chart based on those discussions. So whether the patient has a discussion in the office or in the inpatient setting, everybody can see them.
Have you been expanding the use of this process through Cleveland Clinic?
We began with our hospital patients. Now that we have all the blocks available, we are starting to identify the patients in the community, those who are in home care. Their nurse practitioners are having these conversations in this way.
The next group is geriatrics. The geriatric team is embracing this initiative, and they are starting to have these conversations.
I’m an anesthesiologist. So one of the first things I thought about is the decisions of a patient [who is incapacitated] under anesthesia, or if a patient needs to keep intubation and go to the intensive care unit. So we incorporated that advance care planning process into the pre-anesthesia clinic. Since 2016, 80% of our patients are completing advance directives documents before going to surgery. Many people believe these [conversations] are only for the dying. We recommend this for everyone.
How does this planning benefit the patients and the health care organization?
Data show that patients with advanced directives have fewer days of admission in the hospital. Also, there are data that say that there are fewer ethical conflicts for providers than when they are taking care of patients without a surrogate. Having a surrogate in the chart is very important and allows us to take better care of the patient.
Our hope also is to increase the number of days for patients in hospice. We believe that we are transferring patients to hospice very late, and we want to increase that because we believe that [terminally ill] patients have better quality of life [in hospice], rather than battling when there is no hope for recovery from the disease.
It enables us to respect the patient’s preferences. I don’t want to give one protocol for every patient. If I have the conversation with a seriously ill patient, I offer the treatment of the disease and also the palliative or hospice option if indicated.
Seriously ill patients can get treatment for their diseases while receiving palliative care. We are increasing the patients who have palliative available, whether we are still trying to cure the disease or whether they are only in for comfort, and then they transition to hospice. We have to offer both options, clearly state the pros and cons in any of them, and then allow the patient to make the decision. Sometimes patients make decisions that are different from what I would do or what my loved one might do, but the thing is if I know that the patient made that informed decision there will be less distress morally.
I think that is the key: We don’t standardize our work with a patient; we standardize our approach in having the conversation so the patient can make an informed decision and make a written plan that can be shared.
Could you tell me a little bit about the work they’re doing in terms of support for clinical staff?
We want to foster caregiver resilience. When a patient dies, we suffer and sometimes can’t share our feelings with anyone. Sometimes I would drive back home crying.
Normally in health care [when a patient dies] we go over and over the case to make sure we did everything we could. We feel like that is a failure, that mortality is a nemesis, and we don’t have a moment to acknowledge our feelings.
One of the things we have established is a voluntary and efficient gathering, called The Pause, around the patient’s body to say some words, acknowledge that we cared for this person, and affirm that death is a part of our life cycle. We honor the person and the team conducting The Pause.
We have also started staff book clubs where we read different books and gather the teams to have discussions. Sometimes we have authors or someone connected with the book in to speak.
The other thing we have established now is Death Over Dinner, taking the opportunity to gather those teams — doctors, social works, nurses — outside of the clinic, sitting at a dinner, talking about our own mortality. Hopefully it’s going to help us to change the way we think about death.
Also, at the clinic we have instituted the Code Lavender that we can call in particularly stressful situations. It brings a care team to the unit to help the staff navigate the situation. This has been very powerful. We had a nurse who lost his son in an accident. We called Code Lavender because he was brought to the unit. It was very traumatic for the unit to take care of the patient who was the son of a colleague.