Tuesday, February 20 , 2018, 12:31 am | Fair 42º

Hospice of Santa Barbara

Steve Jacobsen: Alliance for Living and Dying Well a Great New Local Resource

A collaborative community effort is already making a difference in end-of-life care

My mother suffered what the doctors called a “massive stroke” 17 years ago. She lived 10 days until she died at age 75. She was unable to speak, and it was hard to know if she could understand us when we spoke to her.

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During her time in the hospital and then in a nursing home, we had to do what so many families suddenly find themselves doing: improvising a plan of care for a loved one. We did our best to guess what mom would like to have in her room. We brought family photos and put them on the wall. We ran cassette tapes of the Gershwin tunes she had played so many times on the piano when we were growing up. We tried to keep up with the medical decisions that were asked of us and to follow my mom through the health-care system, but we were often confused and ill-prepared.

When she died and we had to plan a memorial service, we knew only one of her wishes: to have “When the Saints Go Marching In” played by a live band at the end. Like so many, many families, we did the best we could in what seemed like daily chaos and uncertainty. We had some good moments in those 10 days and at the service. But much of it felt jagged, incomplete and lacking the kind of tender, loving care she deserved.

After more than 30 years of being around families in similar situations, I know my family’s experience is not the exception. People are almost always unprepared for a sudden serious illness or death. We do the very best we can, but are left wishing we could have done it better. This is the bad news.

But there is good news. There is a new organization in Santa Barbara — the Alliance for Living and Dying Well — that is making a dramatic difference in helping us prepare for these situations.

The Alliance for Living and Dying Well began several years ago when key representatives from our community involved in end-of-life care began gathering every month around a large wooden table to discuss what we could do to improve what families experience. Representatives came from Santa Barbara Cottage Hospital, Hospice of Santa Barbara, Visiting Nurse & Hospice Care, Sarah House, the St. Francis Foundation of Santa Barbara and the James S. Bower Foundation.

After a year of meeting, two goals emerged. The first goal was to discover how we could work together to seamlessly integrate all end-of-life services in Santa Barbara. A second was to see if we could reduce the fear of death in our community in a measurable way.

In 2009, we received a three-year grant to support the hiring of a project director who could coordinate all the tasks that would be part of achieving these goals. We also added representatives from the Santa Barbara Foundation, the Archstone Foundation and one of the local retirement communities.

Together, we established eight objectives that we believe would make a significant impact on the community. Those objectives included:

» Encouraging as many people as possible to complete a document known as “Five Wishes.” Like an advanced directive, Five Wishes includes legal and medical information about the care you may need someday. It also includes sections for you to describe how comfortable you want to be, how you want to be treated and how you want your loved ones to remember you. Five Wishes is particularly helpful when it’s filled out as part of a conversation with family members or people you trust.

» Collecting and sharing meaningful and memorable stories of people who face end-of-life situations. We are gathering evocative audio and video accounts of local people that will be available through local media and YouTube. Hearing other people’s reflections is a poignant and engaging way for us to think about how we want to face these situations.

» Sponsoring educational events about end-of-life issues and choices throughout town. These have already begun in faith communities, a local athletic club and at SBCC. They will soon be occurring in workplaces throughout town.

» A variety of other initiatives, including improving how health information and wishes are exchanged among organizations, engaging university researchers in specific projects, and gathering evaluations from patients and families about what is helpful for them during a health crisis.

So far in 2010, the Alliance for Living and Dying Well has made steady progress in all of these areas. This is truly good news for everyone who will take advantage of its services.

As a son, I wish the Alliance for Living and Dying Well had been around before my mother’s stoke. If it had been, and if we had taken advantage of it, my siblings and I would have had much less confusion and anguish and been able to concentrate on caring for my mom with more calm attentiveness.

As a husband and father who has personally used the resources of the Alliance of Living and Dying Well, I am grateful to know that my wife and children will not have to face some of the many difficult decisions that may arise when my time comes. They know my medical wishes. They know what kind of music I’d want to hear (Mozart, Bach and Neil Young). They have an outline of my memorial service. My physician also has a copy of my Five Wishes. Knowing how much better it will be for them in the future gives me a peace of mind that I treasure every day.

As one of the representatives of the Alliance for Living and Dying Well, I am already seeing the good it is doing for many people in the community. Over time, I believe the effects are going to be profound.

Click here to find out more about this innovative new project in town.

— Steve Jacobsen is executive director of Hospice of Santa Barbara. Call Hospice of Santa Barbara at 805.563.8820 for a schedule of adult and children’s groups, or to make a donation.

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