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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.
(Read More >>)
This past December, Nancy Zionts, chief program officer for JHF, posted an entry about end-of-life discussions on the Health Affairs Blog. That entry is below.
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End-of-life care presents emotional, physical, and financial burdens for patients and their loved ones. At the Jewish Healthcare Foundation (JHF), in Pittsburgh, we have become somewhat fixated on the fact that the health care system too often fails families and patients at end of life. Unfortunately, failure is what most people expect. But JHF end-of-life initiatives in the Pittsburgh area are showing that better realities are possible.
Recently, the Dartmouth Atlas Project released its first-ever report on cancer care at end of life, which showed that one in three Medicare cancer patients spends his or her final days in hospitals and intensive care units (ICUs), an indication that many clinical teams aggressively and often futilely treat patients with curative care close to the times of their deaths. The report suggests that we are underutilizing hospice and palliative care, which receive high marks from families and patients at end of life.
(Read More >>)Heaven forbid, if someone you loved was suffering from a stroke, you’d want them cared for somewhere where they would get the state-of-the-art care, right?
The Joint Commission (TJC) has certificate programs to recognize hospitals that meet or exceed the standards for stroke care; if your loved one is admitted to such a hospital, you get the reassurance of knowing they have TJC’s endorsement.
Now, what if your loved one was suffering from severe pain, anxiety, shortness of breath, or having a crisis of faith as a result of the treatment for one of the diseases above? Wouldn’t you also want state-of-the-art-care for those problems?
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.
(Read More >>)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.
(Read More >>)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.
(Read More >>)By Jonathan Weinkle, MD
Joe Klein has spent most of his adult life on the presidential campaign trail, reporting for Time magazine on presidential politics. He asks hard questions and provides sharp analysis of both Democratic and Republican candidates. One wonders if, in 2012, he will have a new, difficult question to ask, born of his recent personal experiences.
Klein’s parents recently died, each of them after the long series of illnesses that typifies how older Americans die in this day and age. His mother succumbed to pneumonia in the end, and his father to kidney failure. In a recently published Time cover story and accompanying video, he discusses the experience.
Nothing Klein says will be news to anyone who has recently experienced the death of an older loved one. Procedures were done, like repeated lab draws and placement of a feeding tube, that did not add length of life, but did add to the burden of suffering. The feeding tube was placed because when the doctor in Pennsylvania called Klein in Chuck Grassley’s kitchen in Iowa and said, “We have to put in a feeding tube or we’ll lose her,” he felt like he didn’t really have a choice at that time. The whole truth of how soon Mrs. Klein was likely to die didn’t come out until after the time was already in.
(Read More >>)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.
As a graduate student finishing up the last months of my occupational therapy (OT) degree on an inpatient rehabilitation unit, Mr. T was one of my first patients whom I was completely responsible for all aspects of his therapy. He was in his mid-50’s and just had a large hematoma drained from the right side of his skull. I had no idea what to expect when I first walked into Mr. T’s room, but I quickly came to know him as a caring and humorous individual who was full of life. He was constantly surrounded by his family (with six children it’s difficult to find some alone time!) and by members of his church. Through the advances and set-backs in Mr. T’s functional ability due to his ongoing chemotherapy, we had our tough moments. But after spending an hour and a half together every day, we had developed a solid relationship.
(Read More >>)