End of Life Community Clerkship - End of Week 2

The Clerkship has already come to an end! How quickly time flies. We had another full and valuable week which started on this past Monday at the Center for Living and Working in downtown Worcester to learn about end of life issues for persons living with a disability. We had a vocal and locally famous disability advocate present who I had actually already received a lecture from last year when we learned about spinal cord injuries. She was in a car accident as young woman that left her paralyzed throughout most of her body but her story is absolutely inspirational to say the least. Her initial recovery and the way she build a new life and works as an advocate for people with a disability is simply amazing. The organization they have in Worcester seems to be very well organized and structured having requirements for a certain percentage of staff being persons with disabilities as well as representation on the board of directors. They provide many services for those with disabilities and facilitate the delivery of those services.

We also had talks and discussions that day about cultural issues and sensitivity in delivering end of life care. We learned specifically some issues as they pertain to the black and vietnamese communities.

On Tuesday we had the privilege of attending a palliative care conference and learned a great deal about delivering end of life care to military service veterans. We heard from veterans and health professionals from the front lines and their experiences delivering care and what issues come up. When one our of every four people who die in America are service veterans it becomes readily apparent how important of a topic this is as well as the frequent complex cases seen in this population, especially with those veterans who have seen battle. We learned ways to honor and respect those who have fought for our country and help provide them with the closure they need and deserve at the end of life.

On Wednesday, we heard from two patient representatives/advocates from UMASS who shares with use specific patient cases as a way to demonstrate their roles in the hospital. Their department was one I had very little knowledge about and one I found very interesting and crucial. I was impressed wit their ability to mediate and balance the needs and concerns of the patient and the perspective of the health care provider. The patient reps are there to respond when patients or providers call in with concerns or complaints about their care. They review the case and connect with everyone involved and facilitate mediation and any changes that need to be made to the care provided to improve satisfaction from all parties.

Later that day we headed into Boston to visit the executive office of elder affairs and received a presentation and then had a discussion about the state level of services for the elderly and the support for end of life care. Massachusetts has an extensive list of resources and a central office for helping patients take advantage of those resources.

Today, the final day, we heard from the palliative care attending at UMASS and about an online learning community catered to health professionals: http://www.loisgreenlearningcommunity.org/
We also discussed providing care to the patient as a whole and addressing all levels of suffering, not only the physical manifestations. If we think of these levels as a pyramid with four levels, the base being physical safety, then social connections on top, followed by emotional, and finally self-actualization and existential. This framework is very useful in approaching each patient and understanding what the primary concern is and where healthcare can intervene at each level to provide at least some relief of suffering. We learned ways to provide comfort in the absence of being able to provide the physical safety patients seek from modern medicine which can help at least provide relief in other aspects of a patient's suffering.

We ended learning some more about MOLST (Medical Orders for Life Sustaining Treatment) which is a MA initiative to hopefully soon have a state-wide utilized medical order which patients discuss with the healthcare professional and keep with them at all times which keep clear what medical treatments patients want in case of emergencies or at the end of life. It's a crucial step toward providing patients what they want and moreover making clear what they want by starting the discussion early before the situation in which these measures are decided upon arises. I am optimistic about the implementation of MOLST and believe it will be in place soon and the impact and benefit to patients will be seen as priceless by everyone involved.

Thanks Christine and Joanne for a great two weeks!