Closure.org Blog

From the John A. Hartford Foundation Blog

By Amy Berman

Shortly after I was diagnosed with inflammatory breast cancer a scan showed a hot spot on my lower spine.  Was it the spread of cancer?  My oncologist scheduled a bone biopsy at my hospital, Maimonides Medical Center, in order for us to find out.

A few days before the procedure, I went in for preadmissions testing.  As part of my formal intake, in addition to collecting my insurance information and poking and prodding me a few times, the nurse asked me if I would like to fill out an advance directive. This was not because she was a miraculous oracle who knew the outcome of my biopsy, which would leave me with a Stage IV  diagnosis. No, her question was merely standard procedure.  I said yes, and shortly, a specially trained social worker arrived to walk me through the process.

A cheerful young woman reminiscent of a camp counselor sat down next to me with papers neatly attached to her clipboard.  The first step, she explained, is appointing a health care proxy, someone you trust to make health decisions for you should you become incapacitated.  Being a nurse, I knew this, but it was comforting having someone there with me while I filled out the form. I chose my mother.  Since my diagnosis, she and I had had numerous conversations about what I wanted should my disease progress and take away my quality of life. I trusted that she would respect my wishes, even if that meant making painful decisions as my disease progresses.

By Marian Kemp

Talking about care at the end of life is not easy. Yet communicating wishes for care in the final months is important. It helps to ensure wishes are honored and eases the burden on loved ones.

Seriously ill patients and/or their families may hear of a document that can help ensure that an individual's health care treatment wishes at the end of life are respected. This document, called the Pennsylvania Orders for Life-Sustaining Treatment or POLST, was approved for use in Pennsylvania late in 2010 by the Secretary of the Department of Health (DOH).

The POLST form is recommended for persons who have advanced chronic progressive illness and/or frailty, those who might die in the next year, or anyone of advanced age with a strong desire to further define their preferences of care in their present state of health. To determine whether a POLST form should be encouraged, healthcare professionals ask themselves, "Would I be surprised if this person died in the next year?" If the answer is "No, I would not be surprised", then a POLST form is appropriate.

By Adam Conway

During the past year I have had the opportunity to say goodbye to my father’s mother and my mother’s father.  They each died peacefully in their homes with family standing by, and I felt lucky to speak to them in their last hours.  From their perspectives, a long, fulfilling, and successful life was at its end.  My Grandfather had served in World War II, opened and maintained a successful business, and raised a family.  My Grandmother, just months shy of 100 years old, had seen more changes in the world than I can begin to understand. 

Despite the fact that each of them had been aware for many years that they would likely pass on soon, they each had chosen to communicate with my generation in a way that glossed over illness and frailty, although when I asked my grandma for advice last year, she said “Don’t get this old! Then again, I don’t much care for the alternative!” 

This was really the only clear opening I had to speak about her wishes for the end of her life, and my feelings about it, but of course like most of us, and particularly young people, I was unprepared to have such a discussion.  I regret this, of course, and should have trusted her to help me through it.  At the time of her death, she had more experience with loved ones dying than anyone else I knew, since she had long outlived almost everyone she knew, and could have been a wealth of knowledge on the subject.

This experience has made me aware of the need to learn about the options that are available and for planning in advance, both for myself and my family members.  Despite the emotional difficulty of such discussions, I realize now that I must take advantage of the wealth of information held by people like my grandmother: wise people who have had more experiences than I can possibly imagine. 

A long strand of pink glittery hair was flowing in the breeze.  An equally fashionable purple strand highlighted the opposite side of a thinly contoured face.  This wasn’t a spunky 13 year-old girl. This was my patient, Mr. T, being swiftly wheeled into the gym by his young daughter who had yet to perfect her driving skills. “Look!” she exclaimed. “I bought my dad some presents,” she said as she gestured to the clip-on hair pieces that donned Mr. T’s head.  “Don’t I look beautiful?” he asked while playfully tossing his head from side-to-side.