Closure.org Blog

By accessing www.closure.org, you have made a powerful decision to educate yourself about end-of-life issues and care options. Dying is an uncomfortable topic to consider… no matter what your age. But it’s an important matter to discuss with family members and healthcare providers. You need to know what you want, and what you want to avoid, in the event that your time becomes limited.

There is a great deal of information available about end-of-life. In fact, it can be quite overwhelming. This Web site is designed to simplify that information. We’ve developed simple, easy-to-use online educational materials, tools and resources to help you make informed end-of-life decisions that are consistent with your values and beliefs.

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 Toni Steres

My grandfather is dying.  I tear up just typing that sentence.  He was diagnosed with pancreatic cancer in August of 2010 and without going into details, was given 6 months to a year back in December of the same year. 

As a registered nurse, I know how important it is for patients to make end-of-life decisions before you actually need them.  I have many stories of patients who planned ahead—and ones where patients did not.  As you can imagine, those who did not left their families in turmoil—“What did he want to have happen?  Do you know?  Does anyone in the family know?”

I hoped that my grandfather, being a planner himself, would be willing to discuss this with me.  But the denial stage of grief is a powerful thing.  When I first brought up the thought that plans needed to be made—he cringed and changed the subject.  Later, he told my father that it depressed him when I brought up the subject. 

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.

Michelle Anderson

After she had experienced a few stays in the intensive care unit, I spoke with Sharon, a family member, about her preferences for care at the end-of-life. If she was ill again and things did not go as we'd hoped, what would she want? If the doctors aren't able to wean her off the ventilator, what should we do? She responded by saying "You made the right decision last time."

Several years passed by and fortunately Sharon was in good health. My husband and I recently saw Sharon at Thanksgiving along with our extended family, including Aunt Jean, who was feeling slightly under the weather with a cough. Thinking that it was nothing but a cold, my husband and I gave our ritual hugs and said goodbye. As we left, we smiled when we thought of her cheerful personality and the spunky glitter hat she was wearing, which fit her to a T.

By Jonathan Weinkle, MD

The supposed impossibility of predicting what will happen to a patient is one of the major reasons that doctors and nurses shy away from talking about prognosis with patients (see the "Prognosis" module in the "Closure 101" section of this website).

Perhaps part of the reason that patients and families do not access hospice services until near the very end of life (median hospice stay in the US is 18 days from enrollment to death) is because the getting Medicare to cover hospice care requires doctors to have a crystal ball after all. A physician must certify that a patient has a prognosis of 6 months or less if the illness were to run its normal course. Even using the "surprise test" (i.e. "Would you be surprised if this patient died in the next six months?"), physicians are very hesitant about making this prediction. Either they don't wish to do so in the presence of the family (lest they be seen as "giving up," "losing hope," or simply frightening the family), or they don't wish to put on paper a prediction that might, Heaven forbid, be wrong.

Closure came into being with the lofty goal of becoming a "social movement" with a goal of changing expectations for end-of-life. The change we were seeking was that patients and families could comfortably expect that the care they received at end-of-life would be of the highest quality and consistent with the most evidence-based standards available.

In that vein, there now seems to be a movement afoot to rethink the arbitrary 6-month hospice requirement, in order to excuse doctors from doing something they admit they're lousy at (predicting the future) and get back to the core skills of their profession – relieving suffering and caring for patients in the way that best suits that patient. I have read one too many non-fiction accounts by physician-writers of "The patient who failed hospice." People don't "fail" hospice – but hospice occasionally fails them when it sets arbitrary requirements for who can use it and who can't. Hospice providers become, ironically, victims of their own success when someone survives their 180 days peaceful, comfortable, and still kicking, and the next kick is the one that kicks the patient off the services that have been providing them quality of life for half a year.

Time to review the evidence and revise the rules, I think.

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.