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Patient Partnership in An Advanced Care Planning Program
What was the challenge, opportunity or issue faced?
Despite the many benefits of advanced care planning, such as ensuring patients get the care they desire, reducing family burden, decreasing moral distress and burnout for clinicians and improving the use of healthcare resources, research indicates that less than one third of individuals have completed any document - even patients with life threatening conditions.
At Stanford Health Care, we knew our statistics were not much better. In addition, like many organizations, we had an unclear process, with many different professionals involved and it was often not introduced until late in a patient's life. There were cultural barriers and mistrust when families were approached at this point. Forms were complex and full of legal jargon. We knew we could do better and felt we needed to improve for the benefit of our patients, families, staff and physicians.
What did you do to address it?
We took a number of approaches based on our analysis. Patients and families were involved from the very beginning, including in helping us understand the problem. They became our full partners and team members throughout the work.
We started with the form.
One of our physicians, VJ Periyakoil, MD, Clinical Associate Professor of Medicine at Stanford University School of Medicine, directs the Stanford Palliative Care Education & Training Program and the Stanford Hospice & Palliative Medicine Fellowship Program. She is founder of the Stanford Letter Project. The Letter Project was born out of desire to eliminate medical jargon from the advance care planning process and encourage a wider spectrum of patients to put their wishes in writing.
Working in partnership with patients and families in local community forums, Dr. Periyakoil developed a new way to document a patients wishes in the form of a letter to one’s doctor. The Letter includes qualitative questions and writing prompts, such as: what matters most to me at the end of my life; here is how we make medical decisions in our family; here is what I do/don’t want at the end of my life. Most of these prompts also include sample answers.
To address our process, we formed a team including our patient/family partners and all involved disciplines to scrutinize our workflows. The team was led by our Director of Spiritual Care, Rabbi Lori Klein.We chose to pilot the new process in our BMT population.
Advance Care planning is now part of the Stanford pre-transplant binder and is reviewed by social workers with the patient and family pre-transplant. The binder includes a letter written by patient/family partners designed to present the options in a way that is less frightening and more likely to be perceived as a standard process, rather than because we believe a patient may die. The social workers use scripts developed by our patient and family partners when introducing the topic. Multiple formats are included- both traditional and the newer Stanford Letter, so that patients and families can chose what feels right for them.
What outcomes were achieved?
The new form is now more widely accessible to all patients and families. The Letter Project website (http://med.stanford.edu/letter.html) makes the letter available in eight languages: English, Spanish, Hindi, Mandarin, Tagalog, Russian, Urdu and Vietnamese. The Letter is part of our electronic medical record and is linked to the more traditional advance directive form.
Our research has demonstrated that the new formate is highly valuable to physicians as well and provides information previously unknown to them that changes the care they provide the patient and how they interact with families.
And best of all, the number of our parents completing advanced care planning documents has risen dramatically since implementation. Completion of advanced care planning documents more than doubled in the first 6 months following implementation. Based on this success we are expanding the work and continue to evaluate ongoing improvements, such as use of IPADs in the outpatient clinic setting.
About Stanford Health Care
Stanford Health Care is a renowned university-owned, not for profit, academic medical center. The organization provides tertiary and quaternary care and treatments for rare and complex disease and disorders as well as primary care for our community. We have six centers of excellence: Cancer Center, Heart Center, Neuroscience Center, Orthopedic Surgery and Sports Medicine, Surgical Services Program and our Transplantation Programs.
We are a level one trauma center with a Life Flight Program. While the bulk of our patients come from the surrounding counties, 25% come from further away and 5% come from other states and countries. We have multiple outpatient sites and physical practices throughout the California Bay Area and beyond. We have over 6,000 employees and have been recognized by Magnet Designation three consecutive times as well as many other awards, such the Leapfrog Group, and HIMSS Analytics. We have the largest Patent and Family Partner Program at a single organization in this country.
Our state of the art new inpatient facility will open next year.
For more information, please contact Joan Forte at firstname.lastname@example.org.