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 Mike Light

We were all winded and drenched in sweat, having just completed a high-intensity workout on a particularly humid June evening.  Lying on the grass, recovering, we began to discuss a common topic for us: nutrition and the best place to buy fresh produce.  Our workout group is composed of six recent college graduates.  We are educated, socially informed, and try to live as healthy a lifestyle as possible.  But while we care deeply about our own wellbeing, in an effort to prolong our lives, we never took the time to think about the end of our lives.

Since I started working on the Closure Intiative, I have become more enlightened to end-of-life issues.  Even though I volunteer as an Emergency Medical Technician and have helped patients not much older than myself who were seriously ill or injured, it never struck me that someday I could be in a terrible car wreck, or fall seriously ill.  Yet, more than 30,000 Americans 15 to 24 years old die every year, over half from unintentional injury. In the age of modern medicine, many of these deaths are preceded by invasive interventions and aggressive procedures.  So, lying on the grass, I asked my workout buddies if they had ever considered end-of-life care.  What kind of treatment would they want if they wound up in the hospital?  Would they want to be on a breathing machine? Did their families know their values and their wishes?  Were these wishes in writing? They each had strong opinions about what level of aggressive care they would want to receive and how much quality of life they were willing to sacrifice for an attempted treatment.  Perhaps not surprisingly, they did not have their wishes spelled out in writing, nor had they had serious discussions about the topic with their loved ones – the people who would have to make decisions on their behalf if they became incapacitated.

By Jonathan Weinkle, MD

Every doctor and nurse knows what the vital signs are. There are four of them: pulse, respiratory rate, temperature and blood pressure. They are called vital, meaning crucial. Meaning alive. Meaning essential – both to the patient, who cannot live without them, and to the medical system, which cannot function without them.

More recently a fifth vital sign has been added: oxygen saturation. Surely to a creature that breathes air in order to live this is crucial, too. So there are five vital signs, five numbers that we must know about everyone in order to know anything about them at all.

That is, until they are dying.  When vitality is about to be extinguished, how vital are the vital signs? How necessary, how crucial, is it to awaken the old man from a peaceful sleep to discover these formerly all-important pieces of information?  When all have understood that death is approaching? After all, if we find the vital signs are abnormal, that there is a fever, or elevated blood pressure, or slow breathing, what will we do?  Will these bits of data tell us anything other than what we already know – that the end is near?