Saturday, July 11, 2009

Some helpful constructs

Two Paths Through Pines
photograph by Mark A. Kawell


I’ve developed several metaphors that have proven helpful when talking to families facing catastrophic injury/illness and the possibility of death, and who need to understand end of life care in a meaningful context.

To start, let's stop using the awful expression “withdrawing care.” None of us would feel comfortable taking something away from a loved one, especially when that something is literally keeping our loved one alive.

I use the term “redirecting care,” to emphasize our conscious decision to focus on a specific set of objectives – most notably comfort, dignity, and family closeness. This idea also makes better sense when considered in the context of what I describe to families as the three basic paths guiding care in the acute setting.

Curing – The first path focuses on curing the patient’s underlying illness or injury. I use antibiotic therapy and surgery as examples. Often, the patient’s own history includes one or more initial treatments directed at curing, so this is pretty straightforward for most people to understand.

When a patient’s condition is dire, it also helps the family see that the path to a cure may be highly uncertain at best, or even unrealistic, no matter how desperately they may hope otherwise.

Support for Healing – The second path emphasizes actions that support the patient’s own ability to heal. I point to interventions like the nutrition from high calorie/high protein tube feedings, and intubation with mechanical ventilation, as ways that we help a patient get better. I also point out that these measures are generally only needed for a limited time, even if that temporary period extends for weeks.

When a patient hasn’t improved or recovered despite our actions, the family usually finds it easier to understand that the possibility for healing has become more remote.

Comfort and Dignity – The third path is entirely devoted to keeping the patient comfortable in whatever way is required - controling pain, easing air hunger, and calming agitation; and to maintaining the patient’s identity as a person with friends and family who love them.

I also emphasize and identify ways that the family can join in providing this comfort and insuring this dignity.

Families are more at ease when they’re confident we’ll help keep their loved one comfortable, and when they know they’ll all be treated with respect and not left alone.

I’ve found that these three concepts of care support more meaningful discussions with families to determine the most appropriate goals of care. We’re less likely to get into misunderstandings and struggles, and more likely to focus on what we all agree is most important.

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Mark Kawell lives in Minnetonka and Ely, Minnesota…He studied photography, film, art and architecture at Bemidji State College, the University of Minnesota and the Minneapolis College of Art and Design.

Kawell worked for many years as a product and architectural photographer and was an instructor of large format photography at Bemidji State College

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During the last decade Mark has devoted more time to his personal photography. He has photographed in England, Holland, Italy, Germany, California, Washington, North Carolina Canada and Minnesota. He works primarily with a 4x5” wood field camera.

5 comments:

  1. This post is featured in this month's Palliative Care Grand Rounds!

    http://risaden.blogspot.com/2009/08/palliative-care-grand-rounds-august.html

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  2. Great post! Something you obliquely covered but which I'd like to underscore, redirecting care, as I discovered in my mother's case, often involves supporting rallies, which happen fairly frequently to people who we designate as closer to death and in line for "redirected care". My mother rallied less than 24 hours before her death. I've heard this is common. Considering care that supports these rallies, while, at the same time leaves room for the rally's decline, makes sense, too.

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  3. I bet Ely Minnesota is a fun place for you,and your 4 X 5 wood field camera...:)

    I took some pictures right out of town here,and it felt that even a person who dont even know how to use a camera,can still take a good picture..:)

    It's so pretty here in Ely,and you being an artist is drawn to it.

    Glad you are doing what you love..:)

    Great blog too..:)

    Elizabeth in Minnesota

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  4. Hi, Elizabeth - thanks for your comment, and your compliment. I'm not the photographer, Mark A. Kawell is. He's very good.

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