Our Care Wishes
Many patients experience care at the end of life (EOL) that is fundamentally at odds with their preferences. Care that could have been more preference-concordant had their wishes been documented and shared in advance. The failure to know and follow an individual's EOL care preferences can lead to moral distress among family members, inappropriate utilization of hospital resources, and significant unnecessary costs for patients and health care systems.
Advance care planning (ACP) involves discussing and documenting a patient's wishes for medical care so that if they are too sick to make decisions, loved ones and doctors can carry out preferences on their behalf. ACP enables providers to administer high-value, human-centered, and preference-congruent EOL care.
It was Benjamin Franklin—the founder of our University of Pennsylvania—who said, "In this world, nothing can be said to be certain, except death and taxes." But whereas we have software that helps people manage their taxes, we have no software anywhere near as effective to help people manage the other certainty they face.
Our Care Wishes (OCW) is a free digital platform that enables users to create, store and share detailed preferences about EOL care wishes.
The platform, designed with input from patients and caregivers, has several unique features to address conventional ACP barriers.
Because a perfect completed document is often the enemy of early consideration and discussion of wishes, OCW offers a shopping-cart approach that encourages but does not mandate full completion.
Because the heavy legal requirements of official documents pose barriers, OCW produces documents suitable for wet signatures, witnesses, and notarizations to meet state legal requirements while also permitting less legally regimented documentation of personal wishes. This includes reflections on care goals, organ donation, the naming of surrogates, and even preferences for memorial ceremonies.
Finally, to increase accessibility and encourage discussion around EOL care, the platform facilitates sharing with a care circle of family and friends and allows Penn Medicine patients to add advance directives directly to their electronic health record (EHR).
With OCW, patients can document, share, and access advance care wishes from anywhere with anyone at any time. By removing barriers to completion, OCW increases the likelihood that patients will receive EOL care congruent with their goals, values, and preferences.
To date, more than 2,400 people have documented their wishes on OCW. Eighty-nine percent of users have shared their preferences with at least one care circle member, and 39 percent have linked their ACP preferences to their Penn Medicine EHR.
OCW is the primary ACP resource offered to patients upon admission to The Hospital of the University of Pennsylvania. It is also currently being utilized in several clinical areas across the system, including primary care, oncology, and home palliative and hospice services.
Harnessing data from the OCW platform, we found that when the COVID-19 pandemic struck, people filled out advance directives at five times the rate they had before. Advance directives in the COVID-19 period were also completed in more depth than the pre-COVID-19 period, with users populating a greater number of optional goal-setting modules on the platform. Learn more.