In 2008, I received an anonymous letter from a family member of someone who had recently passed away. This emotional letter conveyed the heartbreak that the family had endured while their loved one was dying. Although being treated by top physicians, the patient was not recognized as someone who was dying.
Therefore, the family was denied numerous requests for hospice consults.
When someone you love is dying, there can be tremendous pain. The family and the patient should have as much information and comfort as possible to make this very unique time more bearable. Sadly, that is not always the case. At Hospice of Northwest Ohio, we are dedicated to caring for the terminally ill. Since 1981, we have been the Toledo area’s largest provider of hospice care. As a non-profit, community-based organization, our mission is to provide specialized medical, emotional, and spiritual care to people of all ages – and their families – living with any end-stage illness.
That anonymous letter in 2008 came with a donation and a clearly stated purpose: to fund endeavors that seek to educate physicians and medical students about the dying process, so no one would have to endure what this family did. We knew we had been given an enormous opportunity and responsibility.
Until 2000, medical schools did not require training in end-of-life care. It has always been difficult to prioritize this topic in a packed curriculum for students and beyond demanding schedules for physicians. However, the more we looked around, the need was critically evident – and we had been given the resources to make a difference.
We knew we must be creative and think beyond what already existed. We had to come up with a way to truly engage overwhelmed med students and extremely busy doctors. We also had to remember that doctors are trained to cure; they approach every challenge from the perspective of fixing, of making well. Acknowledging the need for knowing how to properly have end-of-life conversations would perhaps be akin, in their minds, to admitting failure. How could we arm them with knowledge and tools we knew they and their patients needed while minding their sensitivities?
We had seen Root Inc. speak several years ago and were moved by the company’s approach to engaging people as the drivers of change. We chose to work with Root on this very special initiative because we believed they could help us achieve our goal in a creative and compelling way.
Together, we determined that the missing link in existing programs was that no one engaged physicians at an emotional level. There were tools and vocabulary prompts, but there was nothing that touched the heart, allowing them to create a personal connection with the subject matter. We realized we could make the biggest impact if we tapped into the hearts and minds of students and doctors – helping them visualize how difficult the end-of-life process is for patients and families and seeing how beneficial a positive experience could be for everyone involved.
We invested a lot of time in discussing what the right medium for our program would be – a medium that could move our audience to take the time to learn about this very sensitive topic. As we got clear on our priorities and goals, we zeroed in on creating a multi-faceted program, including:
Video – The visual and auditory nature of cinematic storytelling is so powerful. We wanted to utilize this medium to convey the emotion involved in having end-of-life conversations and what beauty can be realized when the process is handled the right way. We gathered a mix of specialists from a variety of hospitals that were representative of the medical population we hoped to target. Then we gathered family members who had experienced a loved one passing away. The video is designed to tell personal stories, from every perspective, with true feeling. The piece breaks at varying intervals to allow for group discussion and reaction to what is seen and heard. It closes with a segment on hope and how everyone can play a role in redefining hope as part of exceptional end-of-life care.
Website and Continuing Medical Education (CME) Course – Our medical director at Hospice of Northwest Ohio and Root Inc. collaborated to develop the End-of-Life Conversations website. The website hosts the video (and footage not shown in the main piece), links to other resources on the topic, and a logged-in view that enables individuals to take a test online to earn CME credits for completing the training. Every subscriber can privately access the site in real time to see how many of their physicians have logged in, taken the CME, and performed other activity on the site. Each month, we report CME participants to the University of Toledo, which authorizes the course credits. The content and the experience had to be just right to set the tone and make the site enjoyable to use.
We have aired the video at a number of meetings and with colleagues around Ohio and the country. The feedback has been overwhelmingly positive – people are really blown away when they watch it.
Our ultimate goal with End-of-Life Conversations is to have as many doctors and medical students as possible watch the video and improve their skillsets around having these conversations. This is set to happen through a variety of channels including at hospitals, medical events, via lunch-n-learn sessions on site at medical practices, and more. We will also offer the video and web resources to large non-profit hospice centers, like our own, in every state. Separately, we are developing partnerships with leading hospitals and other medical service providers to disseminate this training to their employees. The key is having partners who are invested and committed to achieving the same results that we are.
Everyone involved took on a difficult topic with grace and was moved many times by the depth of emotion that accompanied this process of bringing our vision to fruition. We believe the best is yet to come, and the difference this will provide to families is immeasurable.